Name :: mary davis
Email_address :: mimogened@wingnet.net
Story :: midyear 2003-sulfa allergy(topamax) rashing,raised angry places that
looked like burns,big hole in center w/white,clear fuild head,itching dry,all
over. peeled,left ugly ulcer like patches then scars. i was not dianosed with
sjs until 2005,jan. the whole of 2004 was horrible for me, many visits to the
docters office,emergency rms.,outbreaks ocurred on zyprexa,geodon,and 4 other
meds. the fallout was copd, digestive tract , thoart closed,eyes-could not
read my bible, legs hurt,knees,feet,migranes. the topper was a letter i recieved
from my medical docter telling me to call her office. the office told me to go
to the emergnecy rm.now!gave me 1 hr. to get there and only told me they would
call ahead. i was scared, the hospital put me on the heart floor w/lithum
toxicicity on dec.9,2004 i was taken off of all moodstablizing drugs, by the
middle of dec.2004 me outbreaks had almost stopped and the places were drying up
and leaving bad scars. still i was not dianosed with sjs. i was afraid to go
back to my proir docter(for bipolar disorder) so i went to a docter i had had
in the past, on the first visit he looked at pictures i had my daughter take of
my scars, and the few active places still left, and he looked at my face,arms in
office and said"that is stevens johnson syndrome, i've seen it before" he said
to go to the library, get online and search the websites for information. GOD
BLESS HIM! NOW I know what is wrong, but that does't help with all i am left
to endure. the emotional fallout has been devastating this is mar. 5,2005 and
all any of the docters have been informed that this is sjs, but now all they can
do is deal with the symtoms , i do believe there are angels watching over us, i
still ask, why was i left here, there must be a reason. pray for me please.
mary d.
Name :: Hedren Dougherty
Email_address :: kbd@htc.net
Story :: As I speak, I am recovering from a second round with SJS. Never in my
wildest dreams did I ever think I would deal with something so horrible more
than once.The first time was 9 years ago. Right before my 30th. birthday. I had
ende up sick with diarreah.Long story short,became dehydrated,took ammodium
ad,didn't help.I went to the small hospital in my town,figureing I'd get some
fluids pumped back in me and be fine. NOT the case. As soon as th IV went n and
the fluids started rolling, the rash took over.Compared to a lot of these
stories,I feel mine is quite minimal in diffects.Non the less,just as
frightining. I ended up burnt pretty much from head to toe. Peeled inside and
out (hard for others to understand) for what seemed like forever. My eyes were
burnt and to this day very light sensative. I had lost all taste buds, and sence
of smell. I have been able in the past nine years to get some taste back, but
mot much smell.I tend to pick up certain oders,and for the most part aren't the
enjoyable ones.I did loose my hair also,luckily it was growing in as fast as it
was falling out.
Like I said, this was 9 years ago,today March 2,2005 I sit here doing it all
again.And as kids say these days,IT SUCKS!!!Once again,I thought I had a flu
bug.The doctor gave me flu meds and to get the fever of 103 down,switched
between tylenol and Ibuprophen every 4 hours. And that was when things went
bad.I new what to watch for...rash.I became dehydrated again.Believe me,we tried
to keep the fluid level up here at home.It wasn't happeneing.I kept having my
husband look for spots.I had already been sick for 3 days. It was time to do
something.Went to the emergency room,got an IV, A FLU test (never new there was
one).The er doctor immediately told me I did not have the flu,but I had some
kind of Heppititas.I about collapsted.I new EXACTLY what I was in for and not in
the least ready for it.Luckly for me, this was the same place I had been 9 years
prior,The doctors watched very closely and jumped right on it. But this disease
is so aggressive. I'm peeling like a snake again,my eyes are slightly messy.my
sinuses and inside are peeling and draining.I'm assuming the hair will go
again,but hope to deal with that one a little better this time. All in all I'm
doing better. But just a little note...that saying..."TAKE TIME TO SMELL THE
FLOWERS"? Be sure to do that,becauce there may come a day when you can't,and
other sences don't always replace the sweetest things in life. P.s. Just in case
my mother ever reads this,I love you so much.and I could never thank you enough
for all the hours and hours you have spent bymy side sleeping in a hosspital
chair to comfort me.I love you so much...
Name :: Daniel Germano do Nascimento
Email_address :: dgnasci@yahoo.com
Story :: This Story started august/02/2005. I have (04) sons, a woman and (3)
boys. The woman Fabiana is her name, she is twenty and nine years old, married
and have a girl eleven years old. Fabiana would like get some heigh ,than she
went to the "DR" and he prescrived to her:
Decadurabolim (steroide) 50mg (3)injections ten to ten days. A composition
(formula) see bellow :
Ranitidina 150mg
Cobamida 1mg
Cyproheptadin 4mg
Carnitina 35 mg
Buclisina 35 mg To make (90) pills and to take 11:00 am
and 06 pm all days.
Fabiana started the injection august/02 the second august/13 and august/23 also
to taking the pills.
When arrived september/03 unfortunatly my birthday she filled a high fever and
went to the Dr, but they dont can to identify the illness, all time she come
back home and more and more time taking different medicine. September/10 more
or less she stayed very bad, her skin was all scraching,and with a very lot of
red spot and her body all swollened. The Drs here made a meet to discuss the
illness, but anybody fouded the root cause. Fabiana was treating only her skin
and dont know that was with (SJS). She stated get bad in our home and october/01
she was to taked inti hospital very bad , she was to ICU with : Taquicardia
(Heart running fast), with out air, and all body injured.
Now the Drs said us that she was (SJS).
Her kidneys stoped, her lugs was with whater, her liver stayed swollened and she
was to induced coma. She stayed very very bad and october/17 the drs call us and
told us that was the and , Fabiana stayed october/17/18/19/20 with all orgaos
dead, october/20 we get a translate to another hospital in Sao PAULO she was
deading by hospital´s infections and she get two cardiac arrest .
She needed to be tranlate by jact to Sao Paulo because her situation was very
danger and the time was finishing. The new hospital is very good then Fabiana
has a better treatment and she started her slowly recoveration she stayed
without skin seven times, has more four cardiac arreste we made prayers all
night and day. We founded you in the site and we stayed very afraid aboult
Fabiana´s eyes , but it is okay, no blind.
She stayed in the hospital (116) days , she come back home january/26 is
recovering her hair is growing, her fingers nail too, her skin is slowly clearin
again.
We made very communications with people of Fondation and we receive and send
E-MAIL to their yet.
I am pleased to know the fondation because help us with goods informations .
Fabiana is recovering in home, but she is recovering fast. If you need some more
information aboult Fabiana illness fell free to contact us.
The hospital´s name in Sao Paulo is SÃO LUIZ is a excellent hospital there maybe
you get more informations aboult. Fabiana´s name is Fabiana Sampaio do
Nascimento Maciel. She stayed there october/20 to january/26.
Name :: Peg Johnson
Email_address :: mainenannie@yahoo.com
Story :: I have been having a terrible skin problem, I itch severly everywhere.
my body gets very red at times. I have several sores on my skin. At times it is
painful and extremely itchy at the same time. The worst areas are my back.
I have taken celebrex and motrin for quite a long time. I have stopped taking
them both.
Sincerely, Peg Johnson
Name :: Renee
Story :: I was diagnosed with SJS last year after taking Lamictol for
3 weeks. It was the scariest experience of my life, and it took
visiting the emergency room three nights in a row before they would finally
believe what I was telling them. I knew what I had, and the doctor insisted
twice that I go home. On the third night, when I could no longer walk, a
dermatologist finally diagnosed the SJS.
I almost lost my life, and now having a preschooler who regularly....until
now..takes childrens Motrin for fever, I am scared to death of what might happen
to children who are sent home because their doctors are unaware of the syndrome.
Name :: Stephanie Fuel
Email_address :: cypresspba@centurytel.net
Story :: On November 22,2004 I took my 8 yr. old son to our doctor because of a
bad cough and sore throat. He was diagnosed with a COLD, and given Guaifenesin,
which is a cough medicine with codeine. I also took my 6 yr. old son the same
day,for the same symptoms,but he was diagnosed with something else,so my 6 yr.
old was prescribed Augmentin. The doctor prescribed enough for both of the boys,
and told me the dosage to give my 8 yr. old,if the symptoms persisted. The
symptoms did persist and the cough and throat got worse instead of better so I
began to give Trey,who is my 8 yr. old,Augmentin the night before Thanksgiving.
Trey had a fever that evening so I gave him a dose of Children's Motrin for the
fever. Later that night his eyes began to itch and swell, they looked as if he
had been crying all day, his fever did not go down so I gave him another dose of
Children's Motrin.By Thanksgiving morning he was complaining of not being able
to swallow w/o hurting and his eyes were matted shut.I assumed it was from the
cold and gave him more Augmentin and Motrin,needless to say he did not eat and
barely drank that day.The next day I took him to the ER and by then he had what
I thought was ulcers all in his mouth and nose and was complaing of not being
able to breathe good and hurting all in side his body. He was hospitalized,but
they were not sure what to diagnos because there were no spots or blisters on
the outside of his body other than his lips,he was getting worse so that
hospital transferred him to Children's Hospital,there he was diagnosed with SJS
or EMM and given the IVIG treatment after a day or two.His eyes were solid
red,not a single white part shown.He was in the first hospital 2 days the second
for about 1.5 weeks. If it were not for the PRAYERS of TRUE CHRISTIANS I really
think my son would have died or had side effects the rest of his life. I know
that JESUS HEALED my son. We RECIEVED A MIRACLE.
Name :: Hedy Dougherty
Email_address :: kbd@htc.net
Story :: March 4,2005
I have just returned home from the hospital. This is the second time I've had to
deal with SJS. Not for sure yet, but the only thing I was taking was Ibuprophen.
The first time was 9 years ago,right before my 30th. birthday. I had
diahreha,took imodium ad, became dehydrated and ended up in the ER. They started
an IV for fluids, and the rash ran like wild fire. Doctor after Doctor looked at
me. They were stumped. I live in a very small community, with a very small
hospital,and they just had no clue. Luckily, my doctor made LOTS of phone calls,
and worked like crazy to find the problem. The first time I had a rash on my
legs,back stomack,face,pretty much everywhere.My eyes were messed up,my mouth
was a mess.along with my sinuses. Dureing recovery I peeled my skin for what
seemed like forever.My eyes have been light sensative ever since,but no
permanent damage. My taste buds were all gone, but did eventually return. I lost
my sence of smell. That is most of it.I could pick up certain sents. But not
normal. Smoke didn't smell like smoke. Coffee didn't smell like coffee. This has
been one of the hardest things to deal with mentally for me. Like the saying
goes, "Take time to smell the flowers"You never know when you won't be able
to.And with out the sence of smell, taste is pretty much gone too.I lost my
hair. It did come back,although not like it was.
This time,I thought I had a flu bug. Went to the doctor ,got a shot for
nausea,and a perscription for the flu.I was also told to switch tylonal and
ibuprophen every 4 hours for my fever of 103. And drink lots of fluids,Being
affraid of SJS,I kinda knew what to keep an eye out for. Although this time was
different. I had my husband look me over for a rash. He said there was a small
one on my back.We watched it close.My hands and feet turned red,itched,burned
slightly and as stupid as this sounds,didn't give them much thought.The doctor I
saw for the flu,when she saw my hands and feet,looked at me and just said,"well
now you're a wierd one."Go figure.Later that night.I was misserable,I felt I had
been hit by a truck.My lips and toung swelled up,and no matter how hard I
tried,I couldn't get another drop in me.Therefor,once again I was in the ER.The
first thing was an IV.The doctor on duty came in,took one look at me ,and
because of my feet,hand and mouth said he believed I had hand,foot,and mouth
disease.I told him I had been to the doctor earlier that day,he asked if they
did a influensa test.I said no,They checked me for strep throat tho.Anyhow, he
gave me a flu test,and said,Good news,you don't have the flu.Bad news,you have
some type of hepatitus.I just said,you have to be kiding me,AGAIN?I knew what
that meant.I had SJS again.I never dreamed in a million years I'd get this
again.Luckily,the doctors knew my history,started me on steroids and got it
under control.I still burned,I'm peeling like a snake now.My mouth was bad,so
painful,my eyes are very sensative,my sinuses are constantly draining,I'm
extremely weak,and to top it off,have gall bladder problems now.Waiting to
recover enough to have surgery.My liver and pancreas are elevated,but should go
back to normal.I'm assuming.I start with many doctors visits tomarrow.Planning
on extensive allergy testing.Will do what I can to avoid this again.Plus,I have
2 children.And allergies can be genetic.For now I'm good.I consider myself
EXTREMELY lucky.I feel my exsperience is so minimal compared to others.Although
just as devistateing.Hopefully it will be a little easier to deal with this time
since I kinda know what to exspect.
While I'm here,I just need to leave a note to my mother,THANK YOU so much for
all the long days and nights spent in hospital chairs.It was a big help just
knowing you were by my side.I love you sooooo much.
Don't know of what help I could be to anyone dealing with SJS.But please,feel
free to contact me.I would love to hear from you.
Name :: Albert T. Wang
Story :: I had a very serious case of skin outbreak in the 1990s, due to the side
effects of Lipitol. I only took 10 mg or about 40 days. There were no increase
of liver enzymes. However, I got a very serious case skin outbreak, with
millions of blisterring all over my body. My feet were swollen to 1.5 times or
more of their original widths. The skins of feet and hands were totally shed.
The skins of my hands were taken off like broken gloves! It was terrible on the
chest, back, and even the genital.
My physician sent me to a very nice dermatologist. He saved me. It took a
long, long time to cure and recover. My physician said that I could be in
shock.
I called the maker of Lipitol to inform them. They were not surprised. They
knew.
Name :: Laurie
Email_address :: Lthomp7392@aol.com
Story :: I had never even heard of Stevens Johnson’s Syndrome until February 15,
2005. My 12 years old son came home from lacrosse practice and said he didn't
feel that good and that his back itched, he woke up from a nap with a small rash
on him. We didn't think much of it at the time and gave him some medicine to
stop the itching. Later that night he said his throat hurt and he had a
headache. He woke up the next morning much worse, we took him to the ER and they
tested him for strep and said he didn't have that, he had a viral infection with
a rash. The itching was so bad he could hardly stand it! His symptoms just got
worse the rash took over his whole body. ON Monday February 14 my husband took
him to the Pediatrician and the told us he has strep and put him on antibiotics
and told us to wait 24 hours, he just kept getting worse. Tuesday morning I
called our Pediatrician and said I am taking him to Children’s Hospital because
something is very wrong! We got there and that is where I first heard about SJS.
They asked me if he was on any new medications and we said yes, he has been on
Trilepal for a mood disorder for 3 weeks. Well after 7 days in PICU and wearing
a burn jacket, and a total of 12 days in the hospital and scars and so much pain
we now know what he had and what caused it. It is truly a shame that anyone
should have to go through this awful syndrome that is so painful! We as parents
thought we were doing the right thing for our son, had we ever known something
like this could happen we would have said NO medication for our child. I went
back and read the side effects from this medication and they do not even list
possible rash.
Name :: Jodie Culverhouse
Email_address :: lucyladybug41404@aol.com
Story :: Lucy my 11 month old daughter had been taking amoxicillin for an ear
infection. She had been on the medicine before and had no reaction at all. I got
her out of the bath tub on Wednesday 3/16/2005 and I noticed that she had red
bumps on her. I called the pediatrician on call and he said to give her benadryl
and watch her. The next morning I went to get her from her bed and she was
covered from head to toe in what looked like chicken pox. I took her to the
doctor that morning (3/17/2005) and the doctor diagnosed her with chicken Pox.
She continued to get worse through the night and was very fussy. Her face
started to swell and she had big patches all over her tiny body that were
turning blue. I was very concerned so I took her back to the doctor, as soon as
the doctor saw her, she knew it was SJS. She gave her the steroid and within 4
hours she was starting to look better. We were very blessed; we did not have to
take her to the hospital. But we were very scared. Lucy broke out in the rash on
Wed. and by Sun. night it was almost completely gone. My prayers go out to
anyone whose children are affected by SJS.
Name :: Roz Prince
Email_address :: roz.prince@ns.sympatico.ca
Story :: I had a very mild version of SJS two years ago. I was 38 years old and
took Sulfa Drug for a bladder infection. Wow I never realized how sick one could
be but I was very lucky. I had a rash all over my body and face, my mouth was an
absolute mess, my eyes were infected, my nose - I couldn't swallow - I went to a
duty doctor who didn't seem to care one iota and didn't diagnose me I was so
fortunate my pharmacist figured it out when I went in to buy the prescriptions
from the doctor - I only had a day in the hospital and they sent me home after
giving me some steroids and told me if I got worse to come back in. I started to
get better - my nose bled for months - I ended up with a disease called
Blepharitus in my eyes,acid reflux,minor voice box damage causing muslces in my
throat to function incorrectly so I am now in voice therapy which could take
years, some minor scarring and my energy level just has never been the same -
are there people out there who have noticed that-my body hurts a lot too - I'm
not sure if it was the SJS or just aging and I have no one to talk to because
nobody seems to know much about it. I now tell everyone I can -PLEASE don't take
unnecessary drugs - if I had truly realized what I know now I would have drank
more cranberry juice! Society has too much reliance on drugs - look at the TV
ads now - anyway if anyone is experiencing similar after effects let me know -
maybe it will make some sense of what is happening to me after this terrible
syndrome.
Name :: John
Story :: I am quickly closing in on my one year anniversary of my own
personal day of infamy, April 25, 2004. The month of April was never a good one
for me, allergies and lots of OTC meds to combat them. Last April I was
quarantined for SARS even though it was just a severe sinus infection. This
time was almost my complete undoing.
As I left my job late Saturday night, April 24th, a co-worker asked me if I
felt okay and that my face looked a little strange or swollen. I told them I
felt fine and as I got home I took a quick peek in the mirror, the last one for
quite a while, nothing out of the ordinary. Why should I be ill, I was just
finishing up my 7 day regimen of Bactrim with one pill to go, those darn sinuses
again. I popped out the contacts and hit the hay.
The alarm had gone off about eleven in the morning and as I struggled to
lift my head I realized I couldn't open my eyes, they were glued shut. I got up
and felt my way to the bathroom and with a warm washcloth, freed my eyes from
their crusty prison. To my surprise, when I lifted my head up to greet the
mirror, my eyes were completely blood red, I just gasped. The blue of my eyes
looked bluer than ever against the bright crimson backdrop that just hours
earlier was white. I knew something wasn't right but they didn't itch so I knew
it wasn't pink eye and certainly not both eyes at once. Every blood vessel in
both eyes seemed broken.
I woke up my room mate and asked him the come into the livingroom, and what
a look I got when he came out. As I sat on the couch debating whether I should
be going to work I started to feel a little feverish and got up to take my
temperature, 101 degrees...hmmm. Then I felt something between my fingers, as I
looked down I saw a welt in the webbing of my hand. As I asked my room mate to
come take a look I turned my hands over and what was normal just a few minutes
ago now was becoming quickly, and I mean quickly, abnormal. My palms were full
of little purple points, like a rash. My room mate said the debate was over and
he quickly got me to the ER. Now I am still feeling fine except for the fever.
Arriving at the ER I got the same strange look from the triage nurse and the
fever was now up to almost 104...and the dots were now halfway up my forearms.
The triage nurse quickly got me in a private ER room and the Dr. on call
was pretty quick in arriving. He looked and after about two minutes said he
thought it was Stevens Johnson Syndrome but it was still too early to tell so he
admitted me. They wisked me upstairs and hung the controversial solumedrol
steriod in my IV. As I sat in the room all night I could see the dots expanding
and now completely just about covering my body. With no mirror access I really
could not see my face though. When the Dr. came in the next morning his jaw
dropped and said with a deep breath, that it was definitely Stevens Johnson and
prepped me for ICU immediately. ICU? wait a minute, what for and what the heck
is Stevens Johnson anyway?
When I arrived down in ICU, that is when I got the full scoop. They asked
me when I took Bactrim last, and I told them I popped the last pill on the way
to the ER. That didn't generate the best facial expression either. He told me
that those little dots are not rashes at all but little burns and that all the
sulpher in the Bactrim ignited in my body and is burning from the inside out,
organs, blood, skin. And since it now covered over 80 to 90 percent of my body
I would probably lose all of that skin and survival chances would not be that
good. It takes about three full days from onset of the reaction to full blown
and since I was only in it about a day and a half, they did not know how bad it
would get. They also said there was nothing they could do but sit back and
watch it and give supportive care. They likened it to a mat of firecrackers
that until the last one exploded it was not over and until all the sulpher in my
body ignited, more damage was to be done. They would act in essence as a burn
unit and to treat anaphylactic type throat closures and breathing obstructions
such as dead esophugeal skin clogging the bronchial tubes.
The three days seemed as if they would never end. Specialist after
specialist after docter after nurse paraded by to look. The dots had all grown
together and now I had huge areas of my body solid purple and blisters starting
to rise. I had already lost the skin on my hands, feet, and privates. I was
pretty groggy with the doses of benadryl in my IV. All of a sudden after the
third day the blisters that were ominusly growing had stopped and the fluid
started reabsorbing into my body. Everyone had seemed very relieved and on the
fourth day they transferred me back to a regular room. I finally got a look at
a mirror and was in awe at the sight. Although family and friends said I looked
100 percent better I thought I looked like something out of a horror movie.
The doctors said I was very very lucky because they all thought I was a
goner. They said I am not out of the woods yet and even though there was no
permanent damage to my eyes, I still had to have check ups to make sure I didn't
develop blood disorders like leukemia or lupus and that nothing else popped up.
I went home after a week and though in pain, I couldn't wipe the smile off my
face. This was truly a second chance for me. When I finally read on the web
what Stevens Johnson and TEN truly were, I freaked.
Going back to work after a month of being out, I felt good. There is some
discoloration that is fading with time over my skin and lots of folliculitis.
No scarring and no eye lesions and really no side effects as of yet. I am
staying out of the sun and am going to a dermatologist to keep up with the
folliculitis and check for skin cancers.
After reading all the stories, I know I am truly lucky and my heart goes
out to everyone afflicted with this syndrome. You are not alone. I really have
to thank my Doctor and on the year anniversary I am going down to the hospital
to do something nice for him. I really feel his early diagnosis and using the
steriod so early really helped in stopping this from becoming worse, and maybe a
little divine intervention too. No more sulfonammide drugs and I wear an ID
necklace constantly. The doctors also said first line blood relatives were also
at risk but I don't remember anyone in my family being allergic or having a bad
reaction to any drug. Like a delayed response, it is becoming a little more
emotionally jarring the further away I get from the incident, and it makes me
want to get out there and scream out so every hospital knows about this and
everyone gets the chance of an early diagnosis. The main thing is it hits the
mucoid areas first, mouth, eyes, nose, genitals, and also the soles and palms.
Telltale signs I hope you will never have to see, or see again.
Name :: Ashton Steele
Story :: When i was seven years old , i was dignosed with stevens johnson syndrom
. Well really at first it was T.E.N ( Toxic Epidermal Necrolysis ) . At that
time i went to decruz and mossa , in altoona , PA . I started getting sick on
December 23 of 1998 . The next day I went to see my docter . He told my mother
that i had either T.E.N or stevens johnson syndrome . My mother knew nothing
about the disease . She was only 25 or 26 at the time . Although I should've
been hospitalized right away , he sent me home and told my mom to give me lots
of liguids . It was christmas eve so he had better things to do then stay there
at the office and and acually do what he was suppose to as a doctor . He told
her to bring me back on the 27 . My mom took me home and did what the doctor
said . I was laying on the couch when i became dillusional . Blisters stared
appearing and then braking open . My mom got worried and called my grandmother
who's a nurse . They talked for awhile and decided to take me to the hospital .
My mom called the doctor to let him know . The nurse said she would ask him if
it was okay to hospitalize me . My mom said "no we're not asking if we can ,
we're telling you we're doing it " . My mother , grandfather , and grandmother
took me to the emergancy room . They accepted me at once . They did some tests
and called the doctors office again . We waited there for a couple hours before
mossa came to see me . He said i should have been hospitalized as soon as i was
diagnosed . After things started getting worse i was life flighted to pittsburg
children hospital . I was there for 5 weeks . Most of that time i was in acoma .
I can rember some thigns from when i was there . Doctor mark , was my favorite
doctor . He was really nice , and nurse brenda . She was my favorite nurse .
After i woke up i was there for about a week . I found out that they had done
sergery on my eyes . Apparently my eye lids had adheared to my corneos . Dr.
Folk did a sergery on me that had only been done to one other person in the
entire world ! After i was discharged from children hospital i went to a rehabe
hospital , on squirrel hill (still in pittsburg ). I had to learn to walk again
, and because of the sergery i was left with severe photophobea . ( seneitivity
to light ) . My mother stayed with me the entire time , except for once or twice
when she took the two hour drive to go back home so she could pay the bills . My
grandparents came up on the weekends when they didnt have to work . Now im older
. I just turned 14 ! I was seven when it all happened , and now i see all the
sacrificed my mom had to make to be with me . she was in her last year of
college , which she had to skip two months of to be with me . She ended up going
to college to take the rest of her courses the next year . My photophobea had
gotten better but i'm still very sensitive to light . My mom tried to sue decrus
and mossa for what they did . The knowingly put me in danger when they didnt
tell her to hospitalize me . They've done more though . A women my mother knows
had a son whos balter burst . They told her it was just a flu ! The entire time
urine was coursing though his body making him sick . My friend jenna went to
decruz and mossa when she was a baby . She had severe asthma and would stop
breathing for minutes at a time . This scared mercy (jennas mom ) so she took
her to the doctor where they told her there was nothing they could do . Jenna
switched docotrs and her new doctor put her on a special machine that she
breathed in a special medicane when she was a baby . She never did it again .
For so long i've never known anyone else who had stevens johnson . I found this
site because for my science class im doing a report on the disease and this site
was the first one . Thank you so much for allowing me to tell you my story and
for reading it ! My best wishes to all of you !
Name :: Marla Brandon
Story :: Greetings,
I was diagnosed with SJS 3/26/03. I must say I am truly one of the blessed
ones. It is weird, but I feel guilty for being okay after having it when I see
so many others that are so hurt.
I had a one time seizure for the first time 3 days after I turned 30. My Drs
put me on Dilatin and I had a reaction to it (just a rash). Then I was put on
Tegretol, and that didn't work. Next was Neurontin and I wanted to stay on
that, but it was suggested that this drug wouldn't be exactly good for me. So I
was then prescribed Lamictal. (UGH) My gut told me to tell the Dr. I didn't
want to take it, but I was scared to get another seizure. (Always listen to
your gut.) Prior to me taking the medicine I searched the website for Side
Effects and that is when I learned of SJS. I prayed that I would never get that
type of reaction. Well, 2 weeks later I started to itch and I thought "oh no a
rash just like with Dilatin," so I took an anit itch drug, but it didn't seem to
work. That night I tossed and turned all night itching. I went to work the
next day like a dummy because I didn't want to call off. I called my mother and
she picked me up from work because she called the Pharmecy and they told her to
get me to the hospital. My mother was persisitant with my Dr. to see me, and
once he did they admitted me. My the palms of my hands were bright red and it
felt like spiders were crawling undeneath my skin. I was blessed because I
stayed in the hospital for 6 days. The skin off my lips came off and bled for 4
weeks. My tounge, mouth, nose, and ears were burnt. I did not have blisters
but bumps all over my body. My face was swolen. The skin off of the soles of
my feet and hands came off (wasn't too painful.) It took me 4 weeks to
physically heal, but to see how I looked in the mirror everyday and worrying if
I was going to look like that or if my skin would come off effected me. I knew
what SJS was because I read about it, so having knowledge in advance of how bad
it could be tore me apart. By the grace of GOD, my Drs knew about SJS, but they
never had a case. Because they heard of SJS they knew how to treat me quickly.
So everday about 5 to 10 Student Drs would come in and study me. That drove me
crazy, but they needed to hear about SJS and see it.
I am happy to report that my vision is still 20/20 and I am okay.
Praise GOD for this site and I am glad I stumbled across it a couple of days
ago. I want to help and I will.
Name :: Donna Aho
Email_address :: donnalaho @AOL.com
Story :: After having been diagnosed with a systemic infection my doctor order
two sets of antibiotics; one being Bacrim in late May 2003. June 1 I was
diagnosed with SJS although not told until I left the hospital without my sight.
The following day I went to my own doctor and he told me the name
"stevens-johnson syndrome." I asked what it was and he told me to look it up as
it was too scary. I asked him for a medication for the terrible eadaches (as
though my brain was literally burning up) and he refused saying he might kill me
if he gave me any medication. I saw numerous specialists willing to help with
the pain but not knowledgeable about SJS. I am now bedridden with the headaches
(MRI shows swelling behind the mastoids), osteoarthritis, uncontrolled
hypertension, mucous thickening, seizuresk, no tandem gait to walk, skin
sensitivity, joint aches (fybromyalgia) and chronic fatigue syndrome. My sight
was repaired with 3 surgeries the last being last year.My bones have become
brittle and the cervical spine is showing cystsm, protruberances, degenerative
disc disease, etc. Interestingly I am scheduled to have surgery to rebuild my
left wrist since there are no ligaments left and the surgeon was kind and told
me they would put me under and give me antibioitics as they do each surgery and
then hard cast my fingers to elbow for 3-6 months. If I hadn't stopped the
surgery I don't think I would have made it thru. I mentioned SJS (not known to
them) and the antibiotics followed by the cast having to be open or letting air
in so I my pores do not burn. It only takes hours for the skin to burn when
closed up..
Please do not let the doctors just go along with what little they know about
SJS. Tell them as much as you can and give examples of what will happen given
the wrong meds, etc. Jeane,our president helped me through although at this
point the doctors say I am totally disable permanently with no chance of
recovery. Just keep asking questions and get every book you can re: SJS.
Sincerely, Donna Aho
Name :: Kendra
Story :: When I was in seventh grade I developed the rare disease known as SJS.
Since I am from a small town not many doctors had ever seen a real case of it.
The doctors didnt suspect this because I was a young, African-American, female
and the disease usually occurs in white males over forty. I was sent to Johns
Hopkins Hospital in Baltimore and stayed there for about two weeks. During this
time I saw some very low lows. I was rushed into their ER on the first day where
they tried to insert an IV. Though their IV team attempted numerous times,
meaning 50, they were unable to get an IV started. I was put into the PICU for
one night and was then transfered to the CHildren's floor where I stayed for the
rest of my time. I began to throw up huge lumps of mucus. They were too big to
be suctioned and I almost choked on my on mucus. I had the huge blisters that
caused me much pain. I didnt feel much of the pain for the first week because I
was on heavy narcotics for the sole purpose to prevent pain. Throughout this
time I had a lot of support from family, friends, and classmates. After a week
or so I had to go through rehabillatation to learn how to walk after being
bed-ridden for so long. This time was very rough but I was eventually released
and live a great life except for a few discolored spots on my skin and a fear of
Sulfa drugs. THey are what started my whole journey with SJS!
Name :: Jennifer
Story :: My story began in August of 2004. I was feeling tired everyday, worn
out. I started to notice that when I ate food or drank any liquids my mouth
would hurt. I noticed small red spots on my shoulders and back white bumps in my
mouth. I went to my doctor who perscribed a steroid cream to use on the spots.
The spots started to get worse and began to spread and itch, I went back to my
doctor who refered me to a dermatologist. I saw him several times over the next
month, he kept telling me that it was Atopic dermatitist and gave me
corticosteroid shots and more steroid creams to use. The spots kept getting
worse and began to blister on my shoulder. At the end of October 2005 the spots
had spread to my neck, arms, hands and my ears began to swell and turn purple. I
couldn't sleep, I felt like my body was on fire, my husband continued to put the
cream on to me with great pain. On November 1, 2005 I called my boss and for the
first time in 3 years called in sick. I went to my primary care doctor. The
palms of my hands were red, my face was swollen. They did a urinalysis on me and
found that I was severely dehydrated. I use to weight about 120 lbs, I was now
at 110. As soon as my doctor came into the room and saw me she called another
doctor in and within 5 minutes I was told I had to be admitted to the hospital
for Erythema Multiforme. What in the world is that??? I was admitted and pumped
with IV fluids and pain medicines and spent a week in the hospital. A different
dermatologist came in 2 days after I was admitted and did a skin biopsy on both
my arms, at this point blisters had formed all over my arms, neck and back. It
was 4 days into my hospital stay that I was told what was going on, I had a
hypersenitive reaction to over the counter medication that I was taking for my
headaches, it was NAPROXEN (Aleve). At this point I was covered from head to toe
with blisters and in alot of pain. I couldn't shower, shave, wash my hair, eat,
sleep, drink, hug my children or my husband. Yes, my children went thru this
whole thing with me I missed my sons final football game and my daughters open
house for dance. I peeled like a snake. It's now April 2005 a few days before my
35 birthday and I still can see areas of brown pigment and now my hair is
falling out, they say its because of all the steroids and that my hair follicals
were burned (my hair on my legs and underarms grows slow to)and I have to wait
until they repair themselves-yeah wait for it to grow and not be bothered by
this-Thats a joke how can you not be bothered by this. And by the way I ended up
back in the hospital in February 2005 for a week again for a Kidney stone and
massive kidney infection-had to have surgery to remove-go figure!!
Name :: Dawn Cato
Email_address :: Dawntrcy6@aol.com
Story :: One minute I'm taking my mom home from the hospital from having a fungal
infection she was on 3 different antibiotics becouse her resistance was low...ah
yes she did get rid of the infection BUT now I am now on the freeway trying to
keep up with an ambulance (with my mom in it) on her way to Stanford University
hospital! The reason?? Her Doctors cant figure out what is wrong with her skin!
She kept complaining of being on fire her body had been covered with thick
yellow dead skin now flaking and peeling and underneath soft red and very
tender.
Now we are at the university hospital and a team of doctors standing around
debating if she has dermatitis or yeast infection or some fungle infection.She
is now in intense pain and I beg to give her something for the pain...thank god
they did. One doctor came to me and told me she had somthing called Stevens John
syndrome. Now in my head I was saying to myself "what the heck is that" he said
it was a reaction of an allergy to antibotics she took.
We left Stanford after 4 days with prednisone treatments and ended up back in
our home town hospital and now she was recovering from it but oh my god her skin
is a mess! The doctor here does not take it too serious becouse of the mixed
opinions from different doctors. Frustrated and depressed I asked Myself what do
I do now?
The doctor looked at me and said to me she needs to be in a skilled nursing
hospital and I said no I would watch her and nurse her and I have been a care
giver for my mom for many years anyway and I see the symptoms anyway..since no
one really knows about Stevens johnson syndrome, taking her to a nursing home
would cause more pain and suffering on her part.
Now here I am with my mom in a living room watching her symptoms come back!! she
was on another antibiotic over a week ago and is having another reaction becouse
she was miss diagnosed when I took her into the emergency room 10 days
ago....never ending.Now her eyes are weeping and very swollen and she is
sleeping and hallucinating when she is awake.Her skin is changing again and I
tried calling the doctor and he has not returned my call...that was two days
ago. I am very depressed and I feel the pain that all of you suffer that have
been reading this.Try and stay strong becouse thats what I have to do for my mom
and I pray she lives through this hell.
Name :: David
Email_address :: Deodragonx@aol.com
Story :: My Mother In law is Going through The TEN stage right now and im shock
at how little people still know about this this Syndrome Even Doctors here at
the hospital we are in say they havent seen this syndrome that often. i wonder
why doctors are not trained more for stuff like this we are fighting with burn
units where we live to get her transfered there i knew nothing of SJS or TEN
till I Found out my Mother in Law was hospitalized with it. Its Makes me And my
Ex Scared to Even Take Over the Counter meds now after reading all this
Name :: lawrence xavier griffin
Email_address :: mrugulyreturns@aol.com
Story :: I'M A 30 YEAR OLD AFRICAN ANERICAN MALE. WHEN I WAS 15 YEARS OLD I
ALMOST DIED FROM A DOCTORS MISTAKE I WAS 15 AND I STARTED COUGHING UP BLOOD FROM
A FRENCH FRY MY MOM DIDN'T KNOW WHAT WAS GOING ON AND NITHER DID I , I HAD
RECENTLY START TAKING A MEDICATION CALLED DILATIN TO CONTRO MY SEZIURES THAT I
STATR HAVING ALONG WITH THAT I START TAKING, MOTRIN AND THAT NIGHT I NEEDED
NIGHT QUILL WHIT ALSO HAS ALL TYPE OF MEDICATION IN IT. I WAS TAKEN TO THE
HOSPITAL AND AFTER ALL TYPES OF TESTING IT WAS NOTED THAT I HAD SJS, WHICH NOT
VERY MANY PEOPLE KNEW WHAT IT WAS AND IT WAS ANOTHER NAME FOR SEVER ALLERGIC
REACTION TO MEDICATIONS. ALL OF MY SKIN ENT UP SHEDDING TO THE RAW MEAT, MY LIPS
HAD TO PRYED OPEN, MY EYE LIDS WAS RAW EVERY PART OF MY BODY WAS RAW MY
TEMPERTURE ROSED TO 104 AND I WAS PUT ON ICE, THIS ORDEAL LASTED 2 MONTHS AND
FINNALLY THEY THOUGHT I WAS GOING TO DIE, I GUESS GOD HAD A PLAN FOR ME BECAUSE
IT 15 YEARS LATER I'M 30 YEARS OLD AND IT WASN'T MY TIME TO GO BACK TO HEAVEN
YET. I STILL CAN REMEMBER THE ORDEAL LIKE IT WAS YESTERDAY, MY BODY STILL HAS
SCARS FOR THE REST OF MY LIFE. THE SCARIEST PART IS THAT THIS DISEASE IS IN MY
BODY FOR THE REST OF MY LIFE CAN CAN TRUTHFULLY COME BACK WHEN IT GETS READY
TOO, SO THEREFORE I WATCH WHAT MEDICATION I TAKE WHICH I CAN NEVER BE TOO SURE
ABOUT WHICH ONES ARE GOOD FOR ME OR FATAL FOR ME, I TAKE EVERY MOMENT OF MY LIFE
SERIOUS AND TAKE MEDICATION ONLY WHAN I'M IN SEVER PAIN. I CAN RELATE TO THE
PEOPLE THAT WENT THROUGH THIS TERRIBLE EXPERINCE AND I'M SORRY ABOUT THE PEOPLE
THAT ARE GOING THROUGH IT NOW AND FOR THE CHILDREN AND ADULTS THAT WERE LOST TO
THIS TERRIBLE DISEASE. MY DEEPEST SYMPATY IS TO YOU AND THE FAMILY.
Name :: Carmen Batista
Email_address :: brownsugar20011@military.com
Story :: 4/24/05
My mother was dignose with steven johnson sydrome about 2 weeks ago,she is
now laying in the icu unit,before my mother came to the hospital she had a fever
of 105 and her lips got swollen a her eyes got red and swollen also,and rashes
started to appear all over her body,she arrived had the hospital at mount sanai
med ct and the doctors didnot
have any ideal of what was wrong with my mom,until she got worse and put on a
ventilator and sent to the ICU,My mother right now is in critical conditon and
fighting for her life,
I' am trying to get her to the burn Unit at jackson memorial hosp,but the sad
part about it is that there is no beds available
for my mom to get better please pray for my mothers health
and I pray for those family that are going through the same thing I am
Name :: Kay
Email_address :: jkmcpherson@msn.com
Story :: Insignficatn rash started Sat. am. progresssed to foot and back.Urgent
care, pcp 2 times with blood work, dermatoligst agred to expeidently be seen,
biopsy, rash worsening with welts, blisteres, over entire body with back with
one large mass. Condistioning worsening with no sleep. Entered ER midnight
where the doctor stated that he wasn't a dermatoligist but would try to help
bring relief by reading his medical journal and consulting with another doctor.
Diagnosis was made of Steven-Johnson snydrom. (Also stated that he wouldn't
show me the pictures in his journal). Administred steroid by injection,
increased atarx strength significatly since it was for a child. Doctor stated I
need a "Paint brush" to apply the ointments. Dematoligist stated that she also
agreed witH diagnosis and was calling me to see about my condition and to
prescribe steroids. She also stated that I had done the right thing by goiG to
the ER. Returned to dermatologist who increase prednisone for longer period of
time.
The disease apparrently was stopped before entering my mouth, vision and private
parts. My husband is very supportive in applying ointments and being so
helpful with his prayers, love and kindness. My daughter is so supportive with
prayers, food, daily calls, visits even with a new baby. Doctors have been very
concerned. Apparently drug "LAMOSIL" which is taken for 90 days for fungus in
nails caused the rare severe skin rash. Taken the drug for 29 days. PCP stated
to quit taking everything including the Pravacol and LAMOSIL and anything else
I was taking.
Name :: Donald Mallen
Email_address :: dtmallen@optonline.net
Story :: I am a 48 yr. old male.
I was diagnosed in 1968 at the age of twelve
with SJS.
I was in the hospital for two weeks before
anyone could get a handle on what I had.
I have not met many people including those in the medical
profession that have heard of SJS.
I was never told what the cause was and did not even know it was an allergic
reaction until reading your web site.
From reading some of the stories I consider myself lucky.
I had first noticed some red marks on my legs, which were originally thought to
be chicken pox.
Then I got sores in my mouth and had a lot of trouble swallowing.
I then felt like I had sand in my eyes, however I never got
sores or ulcers on my eyes.
The most painful part for me was sores on my genitalia.
Every time I had to urinate I would have a sore reopen.
After I was diagnosed I was given steroids and recovered
quite quickly.
Now however I suffer from asthma and other severe allegies.
I don't know if they are related to or a result of the SJS
but am now wondering.
Good luck to all others that suffer and thank you for the information.
Name :: amy
Email_address :: amymblue@alltel.net
Story :: I am writing this in hopes of someone seeing this who can help me.My
three year old daughter started with afever one night.The next day there were a
few spots.The next day it looked like chicken pox.We took her to the doctor and
he said because she had just been on omnicef for 2 weeks and it was easter she
probably had an allergic reaction from the chocolate and medication.The next day
her hands and feet were swollen.The doctor said he would meet us at the
emergency room.He noted that the welts looked entirely different from the day
before and he needed to do bloodwork.It was for leukemia and it was negative.She
had a white cell count that was high and said we were maybe dealing with
juvenile rheumatoid arthritis and would see us on monday in the office for more
tests.Well on Sunday after 3 nights of no sleep we had to move her every 2 hours
because she thought wherever she was laying down it was causing her pain,you
could not go near her she was in so much pain.She was taking naproxen and
prednisolone and they were not helping.Again her doctor met us at the emergency
room.Her feet were BLUE,the welts were out of control and they could not find a
vein for her i.v. because she was so swollen.All of the e.r. staff were baffled
stopping me to ask if the doctor had figured it out yet.The doctor comes by and
says (without looking at her yet)I have admitted her to the hospital she has a
staph infection.WHAT? How did this happen? I don't know he says.After a little
research of my own I discovered staph can be contagious and I also have a 5 year
old at home.Her skin was not falling off so it was not contagious,he said we
caught it just in time.After a week in the hospital(my daughter also could not
walk for 4 days when this started)we went home.The rash continued for 2
weeks,and she wakes up at night in pain.They did immune deficiency and finally
per my request the arthritis test and all she has is an elevated sedimentaion
rate.He says it is all from the infection.After reading the stories on this site
that sound so much like my daughter's(my brother said it looked like someone
took railroad ties and beat her)I asked the doctor if it could be steven johnson
syndrome.He said no and the reason was she had a high white cell count
indicating infection.They did a blood culture that was negative.Iam leaning
toward the omnicef and he won't cop to it.Her second day in the hospital her
eyes were so swollen all you could see were tiny slivers and her lip was
huge.She was given nafcillin and cephalexin which are also penicillin drugs.So
this is where I get confused because Ithink dhe would have reacted to these
penicillin drugs as well.Someone here has to have answers if I don't get this
figured out on my own,someday it could mean my daughter's life.Please help.My
email is amymblue@alltel.net
Name :: Tammy Spencer
Email_address :: delmar_cook@sbcglobal.net
Story :: Hi 6 years ago my husband had steven johnsons syndrome it burned him
from head to toe it was real bad for a long time the doctors kept telling us it
was just his syris and he would get blisters and then them would pop then more
would form it almost took away his eye lids i had to put a rag over his eyes and
i was getting him to eat each day but talking him into it but it was the worst
thing i done because it was just going to his lungs and i thought i was doing a
good thing but more harm than anything but he went to barnes jewish hospital
which were great with him they kept our hopes up when we knew he maynot make it
he went from 180 pounds to 89 pounds when he got sent here to rehab then he had
to learn to walk all over agian and learn to eat his food to had to graduate
just like a baby would it was the hardest thing in the world to watch he started
out with a tube in his nose and he was on life support for about 3 mounths when
he was real bad though and then ensure through the tube then ensure to drink
then he got thinkined liquids then perived foods the just so and so on had to
tuck his chin to drink anything and walking well it was amazing becasue he was
like a little kid he got so excited when he started i was so proud of him for
all he done through all of this he was a very strong man i wasnt sure i could
handle when he came home the care he needed buthe helped me wiht that too he was
amazing man he is still around i seen the pics of these people with this well i
say my husband was just as bad if not worse for 3 mounths he was asleep didnt
know anything becasue of the severty of the blisters but he was lucy just to be
here it was from an atibotic called levaquin he had phenmonia and had to take it
to try to get ride of it then it done this to him he went through alot we all
did seeing him like that was the worse thing i could ever see he suffered at
home for a long time before they figured out what it was but this is my story
and i hope this helps somone else jsu tbe carefull on what you take and if you
break out please stop the meds and talk to you doctor and make sure he sees it a
phone call doesnt show them how severe it is believe me i know thats what we did
because i couldnt get him out of bed to take him in to show them it got that bad
that fast so just becarefull your life is counting on it
Name :: oliver ryan casas
Email_address :: tsekwa888@yahoo.com
Story :: hello im oliver ryan casas, from philippines, 27 years old. my father
died diagnosed with SJS last 1982, and for now im still curious with it, he was
given a anti biotic medicine when he was complaining for his tonsil. and after
that the medicine react on his system. after 2 week my father died. hoping you
can help me to research more. i would like to know if my father get it from the
anti biotic reaction, it is posible that i can get the same reactioin from the
like? and they told me that my father is the 5th who died with it. he is rolando
casas he died in brunei. thans for this site because its helping mwe lot to know
more about SJS. God Bless
Name :: Helene Kahn
Email_address :: wyndogirl@aol.com
Story :: It will be almost 12 years ago that I heard those horrible words.
..Steven Johnson Syndrome. I thought that when the doctors told me about what my
mother had contracted that I would drop dead. My mother was a vital wonderful
woman, mother of two grown and married daughters and very loved grandmother of 4
(at the time) beautiful grandsons that adored her.
My mother was a diabetic and her doctor changed up her meds and gave her an oral
medication along with her shot of insulin...this oral medication was a
suspension of sulfa..little did we know what the results would be and neither
did her doctor. After the fact, my mother began showing the signs of SJS (which
I must tell you was not abbreviated this way since nobody even spoke of it) and
she was fluffed off as being an hysterical woman. She complained of her
eyesight, sore throat and severe rashes. Her endocrynologist sent her to a
dermatologist that told her to take Aveeno baths and go home! Needless to say
she worsened and was admitted to a hospital where they treated her like she had
Aids. My mother missed my son's graduation from grammar school which if my
mother could have, she would have crawled to.
My sister, dad and I were never told anything about this condition until her
wimp of a doctor had his associate call and tell us that she had to be admitted
to a burn unit and only under the condition that her condition was probably
fatal. The doctor then mentioned SJS. My husband went to the library and
researched this thing that we never heard of and found out that all of her
symptoms was so typical and yet they missed it.
Upon being admitted to the burn unit, the head of the unit told us that she was
going to die and that the cause of it was BAD LUCK. Can you imagine. The
outcome was tragic and I lost my mother about 2 weeks later. My best friend and
a wonderful human being. When I have explained what my mother died from, nobody
understands me..it wasn't until a few weeks ago that The Today Show aired a
piece on SJS and again tonight on Channel 5 News in NY. I am truely sorry for
anyone that has any experience with this monster but I am so thankful that there
is a place for people to go to for support and information because I had to go
it alone. In fact the doctors never really would discuss it with me. My family
and I pursued a lawsuit with a very large medical attorney but after careful
review we were told that it would be very difficult to prove because it was
considered idiosyncratic or just peculiar to my mother at that particular time.
I say that is crap. It still doesn't bring my mother back. I would like to
become involved if there is anyway that I can bring awareness to this horror.
Maybe someone else will not have to suffer or their families. Thank you for
listening and there is not a day that I don't feel cheated by the doctors, and
by fate because my mother has missed out on watching one grandson graduate from
Yale and go onto law school, one going to school and learning to be a film
maker, another stucying to become a child psychologist, the fourth graduating
from high school and wanting to become a doctor. She also missed on seeing her
grandaughter who has been named for her.
Name :: Kendal Makowicz
Email_address :: pkmakowicz@netzero.com
Story :: It was 1985, I was 24 years old, and in very good health. One evening
while watching TV with my husband, I complained to him that my right heel was
hurting pretty bad. He took me to the hospital, where I was seen by the
emergency room doctor working that evening. He told me I had tendonitis and to
go home and take Advil. So I did. I had taken one Advil that evening, and one
the next morning. That afternoon, I was sitting in a chair and my elbows
starting itching pretty bad. Before I knew it, I had hives all over my elbows
and around my arms. I went to bed that evening only to wake up at about 3:00
a.m. with my entire body covered in hives, my heart was racing so fast, and I
was having trouble breathing. My husband rushed me to the Emergency Room. They
said I had an allergic reaction to something, gave me a shot of adrenaline, and
when the hives went away, sent me home. I didn't go to work the next day as I
was exhausted from what happened. I didn't feel good so I stayed with my
parents at their home. About mid morning, the hives came back again, my heart
starting racing, I had a hard time breathing, so my parents rushed me to our
family doctor. I told the doctor I was having a hard time breathing, and it
felt like my heart would stop beating, then suddenly start to beat again after a
hard pounding. He gave me a shot of adrenaline, and when the hives went away,
sent me home. That evening, it happened again, only this time the hives were
worse. I was admitted to the hospital and was there for three days. I had
hives everywhere, including the inside of my mouth, in my ears, I mean
everywhere. I had a shot of adrenaline every 15 minutes for hours. My husband
and my parents told me I turned all different colors. The hives were itchy and
hurt at the same time. I don't remember too much of what happened. I was in
and out of it for three days. I do remember five doctors at the end of my bed
looking at me in confusion. The only thing they could determine was that I had
an allergic reaction to Ibupropen, and told me to never take it again or the
next time I would die. They also told me to stay away from aspirin as it could
bring the same effects back again. I went through hell after. I ended up on
heart medication from all the shots of adrenaline, if I ate certain foods I
would get ill, and my heart would race. I couldn't sleep at night for fear of a
reaction coming back and thinking I was going to die. I was tired, and I lost
so much weight. I am 44 now, and to this day, I have to be careful of certain
foods I eat, or any medications that are recommended to me by any doctor. I am
in an absolute panic every time a doctor prescribes me medication. I have to
know everything about it, what it does, or any side effects. When I get strep
throat, or an injury of swollen muscles or joints, I'd rather suffer the pain
rather than to go through what I did when I was 24. That will stay with me for
the rest of my life.
Name :: Kim
Email_address :: lil_fox_16@hotmail.com
Story :: In March 2004, when I was 15 years old i woke up one morning with
conjunctivitis and ended up goin to school anyway. Towards the afternoon I had
very irritated and itchy ears and lips. When i arrived home i realised it was
tiny little blisters causing the irritation. At this time i was feeling
exhausted and fell asleep for an hour. when i woke up i looked again in the
mirror and the blisters had spread, my conjuncitivitis had worsened, and my
eyes, cheeks, lips and toungue had swollen.
at this time my family was starting to panic so took me to the ER. i was there
for almost five hours while steadily getting worse. i was finally seen to just
after midnight and all the doctors were puzzled as to what it could have been.
they gave me steroids and monitored me for an hour. i was administered for the
night.
the next morning i woke up at 6am and felt my face. my lips had swollen to 10
times the six they were and my tongue was so swollen i couldnt talk. i looked in
the mirror and the small blisters had merged into one on my lips and ears and
the rash had spread to my chest and arms. this was only in the space of five
hours.
i remained in this hospital for four days with the rash steadily getting worse
until i couldnt eat because the blisters had spread to my gums, tongue and
throat. my entire body was covered in blisters and were growing rapidly.
at this stage i was transported to the states best children hospital and i was
given a nasal tube, two drips, blood tests and almost anything they could think
of. at this point still noone had any answers.
i was administered to the burns ward and was bed-ridden since the blisters had
moved to my palms and soles of my feet. i was in quarantine since i was so
subject to infection. the blisters on my mouth would burst and heal together
whenever i slept. everytime i woke up i had to stretch my mouth open to breaks
the 'seal' between my lips. every hour of the day and night a nurse had to come
in to scrape the excess skin and puss away from my mouth. the blisters had also
spread to my eyes and tear ducts.
shortly after this i was diagnosed with SJS and was given a one in ten chance of
dying. this hospital had never seen SJS before and didnt have sufficient
supplies for my treatment.
i, like many other people, were told to just let it run it's course.
i later learned it was a reaction to my epilepsy medication lamotrigine. i was
in hospital for two weeks and when i left my blisters had peeled to leave pink
raw skin and my tears ducts had been badly damaged and my conjuntiva of my eye
had also been damaged, effecting my eyesight.
a year later the pink skin has now turned to a grey/purple colour and scared. my
dermatologist has told me it will take another year before my skin returns to
normal.
my tear ducts havent recovered and now i have dry-eyes constantly. i have scars
underneath my eyelids and they will shrink as a grow and will later cause my
eyelid to turn inwards.
throughout the two weeks in hospital i lost 10 kilograms in the space of a week.
hopefully this can help others suffering SJS.
Name :: grace adley
Email_address :: richelle35@hotmail.com
Story :: i am a 41 yr old female that is a single mom in2000 i was attacked by a
great dane two yrs ago i broke out with sloughing blisters all over my body
unfortunately i went to our hometown hospital that doesnt have experience it
wasnt till i went to pennsylvania that a cousin saw me and told me about this
syndrome i went to dermatologist and moany other doctor who looked at me as if
i was nuts the just proceeded to change my meds from bextra vioxx neutontin
topamax oxycontin vicodan lortab you name it and it still happens please help
me as i am on state and have no money to see specialist that dont take preferred
one i have open blisters as we speak and am on augmentin x 4 months a steroid
cream elavil and percocet with no releif
Name :: terre wilson
Email_address :: terwil@aol.com
Story :: i had sjs in 1994 from septra. i have not had an antibiotic
since. i have to have dental surgery and the peridontist
says she needs the name of an antibiiotic she can give me in case i get a post
surgery infection. i am having a hard time
finding the name of something or even finding information on
recurrence of sjs. i do not know what to do. i know other people faced with
health problems must have had to take antibiotics after their initial reaction.
what do people do?
what do people take? i know nothing is 100% safe but there must be something
with a low risk. thank you to anyone who has any information.
Name :: Pam Neville
Email_address ::
alemap@ntlworld.com
Story :: I am a 52 yr old nursing sister in UK and developed SJS five weeks ago
following being given diclofenic (voltarol) for back pain. I noticed a red rash
developing on my legs at first and felt as though I had a slight cold. The
Doctors diagnosed a measles type virus. During that night i started shivering,
shaking and feeling very hot with a temperature of 39 C. I called the doctor
out and he said i had chicken pox. For two days i laid on the sofa feeling very
ill and the rash was becoming progressively worse. My whole body was now covered
in dark red lesions. A friend took me to see the doctor who asked two other
doctors to look at my rash and they diagnosed SJS. I was give a five day course
of prednisolone and advised to drink plenty of fluids and observe for any
swallowing difficulties as i had lesions in my mouth.
I have never experienced (or seen during my nursing career) such a distressing
illness. The itching and swelling and peeling of the skin is unbearable, as is
the general discomfort
There is such a lack of knowledge around this illnes and sufferers can feel very
vulnerable and unsupported. Your site is a godsend and an oasis in a desert of a
lack of information.
Five weeks on and i am still feeling as though my skin does not belong to me.
Nothing appears to moisturise my skin and it feels so tight ( any advice would
be welcome regarding suitable creams or lotions). My blood test results are
abnormal which my GP says is to be expexted. I am still off work.
The worst parts of my skin affected are my feet, mainly the soles and the
itching is still persisting there.
I would love to hear from fellow sufferers.
Pam
Name :: Deborah
Email_address :: mrsdeb@bellsouth.net
Story :: As I write this I am in yet another battle with another onset of SJS.
It for me has been a long battle of two years. Guess I should start at the
begeaning. In 2003 March, I work up one morning to find tiny little blisters on
my hand and feet. It felt as if pins where comeing from the inside out. At that
time I was a 33 yr old mother of 3 children one which is severally handicapped.
The mom inside of me thought wow my allergies are starting to act up from child
hood a few benadryl and I will be okay. I was wrong. By the next day I just
could not take it anymore. I called my Dad (because my husband was at work, at
the fire department.) I arranged for a babysitter and my Dad came and took me to
a emergency room. Needless to say the Dr.'s there had no clue at to what I had,
they gave me some steroids and sent me to a demertaloigst the next day. There I
was told I was having a allergic reaction to medicine and given more steroids
and some steroid cream. At that time I had no clue as to what the next few
years faced for me. Not did I have a clue as to what all of this ment. Now I
know I was having the mild form of SJS called (EM) Erythema Multiforma. I
discussed with the Dr. about what may have been the cause of my reaction, at
that time I was told it was proably a diet pill I had been taken. I didn't
think of the cold med I had taken almost 2 weeks before.
In July of 2003 I started not feeling well. What started out as a simple cold
lead to much worse. I took a common cold med and tried to stay in bed, that is
as much as the mother of 3 can. But when I didn't get any better I hauled
myself to see the family Dr. I had always told him I was allergic to PCN, but I
knew what my symptoms where, my mom had just always told me I was allergic to
it, and she was not with us anylonger there was no way I could find out. The Dr
prescribed me some eye drops that was a sister to PCN. Being the not feeling so
well Pt at the time, I came home and immediately started on the meds got my
children settled and told my oldest daughter who was 12 she needed to help me.
If they needed anything at all to wake me up. I placed a phone call to my
husband who was at his second job on a ambulance as a EMT. My husband who knows
me all to well, knew something was not right. He said he would call me back in
a few. I took a hot shower to relax and see if would make me feel better in the
least. No such luck. I crawled into the bed and covered up my head. 30 minutes
later my husband called to check on me. When I answered he could tell something
was wrong just by the way I was talking. I was having trouble breathing and I
just wanted to be left alone. I didn't care what was going on around me, I just
wanted to sleep but sleep wasn't happening I felt to bad to sleep. After we
hung up the phone I thought I had convienced him that I would be okay with just
a little sleep.
Thankfully he listened to the EMT side of him and came home. He walked into our
bedroom took one look at my face, pulled back the covers and said get up your
going to the hospital. I didn't know what was happening, I just knew I felt
horriable. I itched all over, those dang little blisters I had had back in
MArch where there again. Only they developed much quicker this time. I thought
he was making to much a deal about all of it. I mean I thought another visit to
the family Dr. a few steroids and I would be okay in a couple of weeks. I was
so wrong. He took me to see a Dr he knew in our county that he always
considered to be very good and he was. By the time we drove the 20 some odd
miles to the hospital those little blisters were big blister, I thought I was
going to die, and at that time I don't I really cared if I did. I felt that
bad. Needless to say I was admitted into the hospital through the ER in about
20 minutes. I thank my family and friends for stepping up and take care of my
kids in my time of need. I was started on many medications in the hospital, and
fortunately this Dr had seen this once before. I was told I had SJS. pnemonia,
and that the blisters where not only on the outside from head to toe, but also
in my mouth and my airway. But I was lucky it was caught in time. A high dose
of I'm not sure how many different med, alot of time in the hospital, and I was
sent home. I still remember walking to the bathroom and the feeling of the
blister pop into each other. I was able to be with my children when they
started school after thier summer break was over in the middle of August, but I
remembr I had to wear house shoes, I hadn't been out of the hospital long. And
was looking forward to the appointment with another dermotalogist. Finally I
thought I would have the answers to stop the madness.
I was given another high dose oral steroids and some shots because I was not
healing as fast as they would like. But the good news was PCN was the caue of
my set off. I could stay away from those and the diet pills and I thought I
would be okay. That was when I found out that the earlier reaction in March was
the mild form of SJS. (EM) I spent alot of my recovery time trying to find out
about SJS. We didn't find much and after talking with the Dr. I thought I had
been given a new lease on life. Never would I let anything hold me back. I
would be careful, more careful and know more about the medications I took.
Things went smooth for me. For a while.
In March of 2004 I tought all was well with the world. It had been along time
since i had, had another out break. When I started feeling a cold comming on I
decided it would be okay to take a common cold med from over the counter. I
didn't think at the time that it would send me into another out break of the EM.
Boy was I wrong. Within days of taking the med I started having those little
bulls target blister appear. I tried to get a appointment witht he
Dermatologist but was told it would a month before I could be worked in. I
tried the Dr my husband had taken me to but the same story it would 2 weeks
before he had a opening. I kept thinking does no one know or understand what I
am going through. Once again I called my Dad. He came and got me and took me
to a emergency room, where he strongly demanded I get medical attention. Thank
goodness I did. And was started on steroids once again. I was treated as a
simple reaction to a drug. I don't think it is to well known as to what was
going on. I sometimes think Dr.'s sometimes only half way listen when you tell
them things. So once again during my recovery time I vowed that if it was not
prescribed by my dr. then I wouldn't take it.
In Sept of 2004 I started yet again with another battle of EM. I had gained
more info about SJS in its minor forms and its serious forms. I needed to know
what was causeing this constant disruption in my life. I had awoken with only a
few little red blisters on my hands and feet and mouth. I drove myself to the
Emergency room, and was treated by a dr. who point blank told me I was jumping
the gun, it wasn't a big deal. He gave me a few strong anit-histamines and sent
me home. I felt like I was a idiot. And maybe my past experience had me thinkng
the worst everytime. I was wrong, and so was the ER Dr. By the weekend my
husband was on the phone with the emergency number to the dermatologist. It
took until Sunday to convience him that it was diffently another out break of
the minor form. Monday morning my step-mother drove me to the dermatologist.
Where once again I was told that the thing that set me off was tylenol. It
seemed each time they had a differnt reason for this. And each time no one
really knew to much but to give me a steroid.
By the time April of 2005 rolled around I had decided I would enroll in a
EMT-Basic school I was already a volunteer firefighter for my community and I
enjoyed the medical side of the field. Things have been going great. Until l
got a really good sunburn last weekend. I knew better than to take something
without thought. I rumaged through my med cabinet and found some naproxin that
had been prescribed for me by our family Dr. I had taken it many times in the
past before for a touch of arthritist. It wasn't on the do not take list. And I
thought it would be okay. I was once again wrong. I woke up yesterday morning
with 6 blisters on my left hand and 2 on my right. I could feel the little
blisters under my skin on my feet, and I had one in my mouth. I called my Dr
who had no appointments available but was told if I came in they would give me a
steroid shot and it sould do the trick. I was worried, almost freaking out. I
had not studied this hard in Basic school only to blow it here in the last few
weeks. I called my sister in tears. What should I do I got the shot but I
still wasn't feeling much better. She decided I needed to see her Dr. She said
if nothing else she knew I would see someone who treated me like they cared.
This morning I woke up with another 3 blisters on my hands. My sister was
ringing my phone to tell me that she and my Dad had gotten me a appointment with
her Dr. I drove my handicapped son to my sister-in-laws and then stopped by
dad's where him and my MommaJane (my step-mom) took me together to my sisters
Dr. I was nerves and unsure. I really didn't think this time would be any
different. In the past if I had found a Dr who knew what was going on they
where usually to busy to have a appointment available for me when I needed it.
So what was my chances. This time I was wrong in a way I think matters. This
Dr. knew about this. She treated me aggressively with steroids, antihistamines,
and care. I also am being referred to a allergy specialist whom she knows,
knows about SJS, and EM. The good news is i am not having to sit and wait on
treatment until I get into see him, more good news I was told they have drug
allergy test they can run on me so I will know more in the furture of what I can
take. The best news is I have a new family Dr. one who knows what this stuff is
and knows if EM is not treated properly it will run the full course of SJS. And
the best news so far is I will still be able to stay in school during my final
week. And I am feeling better in many ways. physically because the medicine she
gave me today seems to be working. Alot of the itching is gone, the blisters
are still there but as I well know time will only heal that. Time and the
correct medicine. I feel better emtionally because for once some Dr. some where
knows what to do, she cares, she is familiar with this. And she will see me at
anytime.
I look at the other stories here and know I am blessed that so many other things
could have been worse. In the last 2 years I have had to start wearing glasses.
Because of my weakend eye sight from the SJS break out in July of 2003. But if
that, some physical scares, as well as emtional scares is all I have to deal
with I will be okay. I thank God for blessing me with a supportive family. those
who would listen to me when I felt so many times my world was caving in. Those
who wouldn't give up and kept helping me trying to find help. My sister is the
one who lead me to this web site.
So i owe my family and most of all God a big thank you.
Name :: Angel Rosario
Email_address :: niceguy10466@hotmail.com
Story :: Hello, my name is Angel Rosario. I am very glad that people are
acknowledging the fact that SJS is a serious symptom. I am a two time survivor
of the SJS. Both times were with Motrin(Ibuprofen). I went to Jacobi Medical
Center(JMC) the first time because I accidentally inhaled some boric acid (used
to kill roaches) I got asthma and fever. The nurses prescribed Motrin to me to
kill the pain, which I didn't have any pain. After about 3 days of taking Motrin
I woke up with bleeding lips, sores, and blisters in every possible opening I
had on my body. At first I thought it was the Motrin fighting off the poison. I
was scared for my life because I was doing everything but get better, just
worse. So during my hospital stay I started throwing out the Motrins the doctors
gave me and I started exercising and doing my daily routines. I started to get
my energy back and a week and a half later I was able to leave. This happened
between September and October of 2002.
While I was in the hospital my mother did research and told the doctors that I
had SJS symptoms. She even printed information and pictures for them but they
wouldn't look at it, they told her jokingly, "Who's the doctor here? The Doctors
never knew what I had, they just assumed that I had an STD and I was suffering
from side effects. They tested me for all STD's. I tested negative for all of
them.
At the end they discharged me from the hospital with, "It looks like you were
suffering from Steven Johnson Syndrome brought on by an allergic reaction to
something."
The second time I went in the JMC for a treatment for a sore throat and two
doctors looked at me, swabbed me for a throat culture and told me that the
results would be back in a few days. If they did not call me that meant that the
throat culture was ok and I tested negative, but in the meantime they prescribed
me Motrin again (for the pain). I was still assuming that it was the boric acid
that gave me all the sores and blisters back in 2002. So I took the motrin.
About 3 days later I woke up and heard my mom screaming but I couldn't see her.
I couldn't open my eyes they were sealed shut with dry glue like puss. I heard
my mom screaming, "Oh my god Angel it's back! Look at you it's back! IT'S THE
MOTRIN!!!! STOP TAKING IT! WHERE'S THE BOTTLE?!.... I stopped taking it but by
then I had already taken 1 pill every four hours from the time we went to the
hospital for a sore throat. My mom took me to the same hospital, she said
because they knew my history and they were the ones that gave me the Motrin.
They admitted me again. The next morning the same thing happended again, but my
arms and legs was paralyzed on top of that. At 5:00 in the morning that day I
was crying because I was unable to move in the wheelchair. A nurse put me in the
same room on the same bed as last time. They began testing me for STD's again
even though my mom told them that IT WAS THE MOTRIN because I was fine until
they gave me Motrin. All I had was a sore throat. Again I tested negative for
all STD's. 4-6 days later after testing they said, "It looks like you have
Steven Johnson's again," and immediatelly took me off the Motrin. days went by
and my lip, and the sores from my body healed out. Dec. 04.
Now I am here writing you telling you my stories and I hope you can help prevent
this from happening in the future to other people....especially children.
When I saw your show of the lady that founded Steven Johnson Syndrome Foundation
because of what happened to her daughter, I started crying. All those painful
memories came back all at once. I'm still hurt by this, I still cry because of
what I went through and I thank god that I'm still alive after this deadly
scare.
Thank You Very Much,
Angel Rosario
Name :: Tani Spielberg
Email_address :: jonandtani@earthlink.net
Story :: My sister Zoe Lorca was diagnosed with SJS in May 2005 after having a
severe reaction to Dilantin. The Dilantin was prescribed erroneously following a
minor brain bleed incident, during which she neither had a seizure nor lost
consciousness, so the fact that she had the SJS response to this particular drug
adds insult to injury.
She is currently hospitalized (since May 19) with severe blisters, lesions and
burn-like marks over her entire body, as well as inside her eyelids, nose, mouth
and ears. As of today (May 22), she appears to be recovering slowly -- she can
speak normally again, her eyes look better, and most of all her inherent
strength and bravery (not to mention stubbornness) are coming to the fore and
she is determined to get better.
I know she will be here to post her story from her own experience, but I wanted
to at least get it out here so there is at least one more story to foster
awareness. Nobody in my family had ever heard of this before this happened. You
can be sure we will be making a LOT of noise about it from now on.
