Name :: Leah
Story :: I was diagnosed with SJS at the age of two (1970). I am fair skinned
and was left to play on the beach all day with no protection. My body reacted
severly to the sun. Patches of blisters appeared all over my body, internally
and externally. I was unable to walk, wear clothes or be touched without
feeling extreme pain. I recovered after several weeks.
I never knew what SJS really was until I found this web site. I find it
interesting that this reaction occurs mainly due to prescribed drugs.
Name :: Dennis Turkish
Email_address :: Dennis_Turkish@hotmail.com
Story :: In the winter of 1996, at age 44, I was given the drug Cipro to treat a
localized infection. Upon the eight day of treatment, I developed a skin rash
covering my arms, upper trunk area, and lower legs with bright red spots within
the skin about 15mm in size. Itching was severe along with general lethargy. My
eye sight became impared as bright lights caused pain. Blister-like sores
appeared in my mouth making it hard to swallow solid food. My doctor at the time
recognized it as SJS and treated it effectivly with steriod-based injections,
(Solumedrol). All physical features disapeared with 4-6 weeks, leaving only
mild-moderate scaring to my arms and legs where the blisters appeared. Lense
implants for the scaring to my eyes occured four years later. Today I have 20-30
vision in both eyes.
I was very lucky to have a doctor that recognized these symptoms early. His
advantage to diagnosing this syndrome was due to the fact that he saw two cases
lilke this within three years of practice.
Dennis Turkish- Bakersfield, California
Name :: Harriet
Story :: A friend of mine after taking the AIDS drugs for two weeks she developed
SJS in October 2004, at first we did not know what it was because in Africa it
is not known, even by most doctors.
The doctor who treated her who was elderly, said that this was his second case,
and in the hospital where she was treated they said it was the first case
imagine the hospital was openned around 1950s.
She was admitted with swollen eyes, weakness, and pimple like things all over
her body. She was in hospital for two months and every day we were seeing knew
developments. She almost went into a coma, a tube was inserted in her nose for
feeding. Slowly the whole body had blisters and turned as if she was burnt.
She is now alright and she has left the hospital but she has strong after
effects. She has tearing eyes and they are very sticky especially when she
wakes up in the morning. The doctors have tried their best but it seems they
have failed. Secondly her skin has alot of scars it looks as if she was burnt,
she does not want to get out of the house, she is always indoors for she fears
the people's reactions. The situation she is in, is so stressful.
Name :: Agustina Sihombing
Story :: 41 years ago I suffered from SJS which, I believe was caused by an
alergy to either sulfa or penicillin. But thank God my skin, genitals, mouth
went back to normal. I only still have problems with my eyes and my lungs. I
still cough and some mucous always comes out when I cough. My right eye sight
is almost completely gone, but , my left eye is still normal. However from time
to time my left eye would dry up and my vision would be so unclear. I
constantly have to use artificial tear drops, especially in the morning and at
night.
I want to know what I treatment there is for my cough/lung/mucous problem.,
maybe there are medicines or herbs that can help.
But I never stop thanking God, because I think in my case the SJS that I had was
not really severe. I pray for other victims of SJS disorder that they may
survive it and and be healed.
Thank you
Name :: Carla Pladsen
Story :: My 15 year old son is currently at home, recovering from SJS after an 8
day hospital stay. I believe he contracted it from his 3000mg/day Amoxicillin
dose his Doctor prescribed for an ear infection. He is doing well, I am
cautiously optomistic about his outcome. I am an RN and was not familiar with
this syndrome at all
Name :: judy moore
Email_address :: jumo_2@hotmail.com
Story :: hi. i am a 35 year old substitute teacher, museum guide and volunteer
librarian living in wylliesburg, va. in march of 1981 at a church service i
developed an itch in my vaginal area. my mom asked if i had placed powder
anywhere down there. of course i said no. my folks took me home right away and
took me to the doctor the next morning. dr. moore who was my family doctor at
the time gave me some medicine for what he thought was a minor infection. i went
home and for the rest of that monday i ws fine-went with my mom to work. later
that night the itching started again. that tuesday morning i awoke with a
temperature of 105. the smell from the fever hit you when you walked in my room.
i was taken back to my doctor who called halifax hospital and had me admitted
for tests. a dr. bradley was brought in-not from this area who diagnosed me as
having steven-johnsons syndrome. i do not know how i contracted this disease. i
won't say it was the green pills that dr. ,oore gave me or was it just a test of
something i was going to have to deal with at age 11. but through God's grace
annd the love of my family and friends and my tenacity i am here. i can talk
about it more now and even write about it in my poetry. i am so gald to know
that i am not alone. i have wanted to know for years who else had this disease
besides me. thanks for listening.
Name :: Jennifer Barnes
Email_address :: jenduke1970@yahoo.com
Story :: My 15 year old son was placed on Lamictal for bipolar disorder. We were
told that there was a small percentage of people that take this medication would
have a reaction-Steven Johnson Syndrome. About 3 weeks after taking the
medication, his eyes became very dry and sensitive to light. The 2nd symptom
was a fever that lasted 3 days. The doctor took him off of the medication and
told me to watch for a rash and continued fever. I took him into the ER the
next morning due to high fever and flu-like symptoms. They told me to keep him
off of the medication and sent him home. The following 3 days, he continued
with flu-like symptoms and eye problems. Sunday morning (5 days after original
trip to ER), he woke up with a severe body and face rash. I took him back to
the ER and he started developing blisters on his upper lip and his body was
covered with measle-like bumps. The ER talked to my Family Physician and I was
advised to go home and have Kyle take plenty of fluids. By 4:00 in the
afternoon, he was much worse, shaking uncontrollable, high fever, couldn't see
and continued flu-like symptoms. I took him to a much larger hospital out of
town and people were telling the ER people to let Kyle go before him because he
was very sick. We got in there and the ER doc told me it appeared to him that
he had SJS. They immediately placed him on an IV and transferred him to another
hospital with a pediatric ward. He was in the pediatric ward of the hospital
for 8 days. He is also diabetic, so they had to really watch for secondary
infections. From what I was told he had a mild case of SJS. His face and lips
and upper torso were the worst affected, also his groin area was affected. It's
been 11 days and he is not going to have any scarring, and he is doing well.
The doctors told me I did the right thing to bring him back in, despite what the
ER doctors told me. Because I brought him in and he was treated early enough, it
was somewhat under control. What I stress to anyone, before going on any
medication, ask them if it is associated with SJS. I have pictures to share, if
anyone would like to see them. I called the local TV station and Kyle's story
is being aired on 11:00 news tonite. I am trying to get the word out about SJS
and I also gave them the web site address here, so people can find more
information about the syndrome! Thanks so much for letting us share our story.
The Barnes Family
Name :: Zoe Lorca
Email_address :: lorcaz@michigan.gov
Story :: Hi,
I am a 35 year old woman in Michigan who got SJS as a reaction to Dilantin. I
was given the drug after I had a mild anurism (sp?) even though I never lost
conciousness or had any type of siezure. When they gave me my first intravenous
shot of Dilantin, I experienced the most intense, god awful burning sensation
all over my body. It felt like they had put gasoline in the IV. I was told by
the nurse in the neuro unit that when I could take the pills orally, that pain
would go away. During my hospital stay, a second, much larger anurism was found
and it was decided that I would recuperate from the first brain bleed and then
begin the series of operations to repair the ballon (un-burst anurism) that was
on my right femoral artery in the brain.
The first week back home from the hospital I was taking 300 miligrams of
Dilantin every night and was told I was not allowed to drive because of the risk
of siezure. When I spoke with my Neurologist the second week he said since I
had no siezures nor loss of conciousness, I should wean myself off of the
dilantin. The very next day, after decreasing my dose to 200 mgs, I had my
first SJS symptoms. I went to a "Redi-care" (a non-hospital emergency room type
place) and said I thought I was having an allergic reation and that I was taking
Dilantin. They told me to stop taking the dilantin, gave me a steriod shot and
some benedryl and sent me on my way and told me that I would feel better in 12
hours. By 6:30 the next morning, I was in the ER as the symptoms had gotten
worse, I could not swallow, blisters were forming on my lips, my hands, my chest
- what I now know as classic SJS symptoms. I told them my story, and that I was
on Dilantin and they basically did the same thing, gave me a steroid shot, some
benydrl and told me if I wasn't feeling better I should see my family doctor.
First thing Monday morning, I was in the Doctors office (by this time the hives,
blistering of the mouth, and skin was pronounced), my voice was almost
completely gone and I could not swallow anything but water. I explained that I
had been to the Redi-Care, the ER, that I was on Dilantin and things were
getting worse. He said that since I had already had 2 steriod shots, there was
nothing he could do. At 2:00 a.m. Wednesday, my husband raced me back to the
E.R. with full blown SJS which they finally recognized. By this time I had the
bleeding eyes, the sloughing of skin off my ears, everything. According to the
ER personnel (the same people who sent me home previously), if he hadn't brought
me in when he did I would have gone into shock and probably died.
Prior to this, I was an active person, swam every day, ran every day, loved to
be outside and playing. Now I am trapped inside like a Vampire, I am exhausted
all the time, I have intense joint pain, my vision has been severely damaged
(fortunately not legally blind but dramatically worse than prior to SJS). No
one seems to be able to tell me much about what happens to SJS people in the
long term. Does the pain go away? Will I be able to live a somewhat normal
life again?
Needless to say, I cry a lot, I get angry and frustrated a lot when I see how I
am missing my life. Not to mention, because of SJS, the surgery needed to
repair the remaining anurism has been delayed so in addition to fighting SJS, I
still have a time bomb in my head.
If there is anyone in Michigan or a support group here, please let me know. I
need all the help I can get.
With prayers for my fellow suffers, their families and friends,
Zoe Lorca
Name :: Stephanie Yearwood
Email_address :: lukeandjakesmommy@hotmail.com
Story :: I took Jacob to the doctor because I thought he had an ear infection. He
was seventeen months old. They said that his ear was alittle red but that it had
not turned into a complete ear infection yet. They told me if he got worse to
call back and they would call in an antibiotic. That night he was up and down
screaming acting as though he was hurting. I called the next morning and they
said they would call something in. They put him on omnicef which he had been on
once before. On the seventh day I noticed he started getting red spots on his
stomach. I immediately called the on call nurse and they said to skip that
nights dose of the antibiotic and to give him a dose of benadryl. I gave him
benadryl and put him to bed. He woke up in the middle of the night with what
looked like welps all over his body. I took him to the doctor first thing the
next morning and the spots were swelling and turning purplish. His doctor said
that he had EM which was a minor form of SJS and proceeded to tell us what to
expect as the next couple of weeks went on since that was how long she said most
of these episodes lasted. She put him on steroids which she said were a
controversy in the medical world as to whether they helped at all or not and
told me to keep him on Benadryl. She couldn't tell me if he was going to be okay
or not..whether he was going to live or not..or what to do other than just keep
him comfortable. She did tell me that it was going to get worse..she just never
told me how bad. I took him home crying because I had never had my baby so sick
that I didn't know whether he was going to be okay. He continued to break out in
spots as they swelled and turned purple all over his body. His
face,neck,arms,legs and groin broke out completely. That next night he woke up
screaming in pain that was untolerable and he couldn't walk. We took him to the
er and the doctor said that he had gone one step further than the EM and he also
had serum sickness. They gave him some Loratab which didn't even touch the pain
that he was in. The next day we went back to the doctor and they put him on
Tylenol with Codeine which helped alittle bit. After ten days he started to feel
better. They were the longest ten days of my life. Thankfully he never got
blisters so we didn't have to go to the hospital. Those days were the hardest
thing that I have ever been through but they were a blessing also. I realized
that I need to make the most of every day with my family because you never know
what may happen. I thought I was doing the right thing by trying to make his ear
infection better and then I was faced with the fact that I may lose my little
boy. What a hard pill to swallow..we are only trying to help our children when
we put them on these medicines and we have no idea what they can do to them. God
bless everyone who visits this website. I was one of the lucky ones...my little
boy is still here and healthy with no lasting effects of this disease. I worry
that they can be recurrent but I will ask many questions before he is put on
anything again. I think if I could have found this website when Jacob was sick I
would have been better off knowing that someone else had been through this
before. All I could find on the internet at the time were lawsuits from people
whose children had not made it through which gave me the impression that there
was no way out. I wish there was something that we could do in order to make
this more well known and I wish that we could give our children medicines
without having to worry aobut things such as this.
Name :: mustafa
Email_address :: mustafa111_6@hotmail.com
Story :: hellwo!
i am 17 years old boy and live in norway.i had steven johnsons syndrom two years
ago.i was hospitalized during my illness. i was approximately two monthes in
hospital. for twenty three days my eyes were closed because they were stuck with
my eyelids. my foot got fungus in hospital.and still some scars r to be seen on
my foot. but i can run do anything with them. i am completely fine now except
tears r coming from my eyes because of lack of eye lashes. and my eye lids r
thicker that before. my eye lashes r growing not properly. they r growing in
different directons, some inside the eye some outside. the sickness have left
some marks on my skin. i went to several skin and eye specialists but they said
that it will take a long time for those marks and coming tears to disappear. i
will try to send my some fotos to u if needed. but it is difficult because they
r in an asian country. but if u ask i will.
Name :: Bill Seeley
Story :: I took Sulfa for a week I had mild itching then started to bleed through
the skin the doctor gave me pills and sent me home when my wife came home I was
unconscious in a pool of blood I spent a month and a half in the hospital with a
steroid IV and was not told what that might cause I had two operations on my
back before they tested and found I had aseptic necrosis but not just of the
femoral head but all the bones in my body I now have an artificial hip a plate
in my neck pins in my spine and am looking at hip knee shoulder and who knows
what else replacement. I am allergic to almost all antibiotics and a host of
other drugs and I take medication (a lot that you have listed) for the many
complications I now have. Crones, asthma, anemia, diabetes, arthritis and red
patches on my arms knees and hips Eye lids hands. in November I had the second
surgery on my nose so I could breath, it made it worse so in May they
re-operated and when they made the first cut puss came out and instead of adding
more med pore they had to take out what the had put in and my nose is still not
cleared up or working properly I am just writing this down because I never have
and after all this time It still makes me mad but it has felt good to put it on
paper so to speak. I had never heard of your organization before today I went on
line because I had started taking Feldene and was having reaction how would I
find out if what I have is SJS?
Name :: Sherrie D. Cheeks
Story :: About ten years ago my grandson(Dakota Kee Weyers)was a what we thought
a healthy happy baby.A few weeks after that I went to see him(I live in
phoenix,Az)my daughter lived in Bunkerville,Nv.I realized Dakota did not follow
sounds and something kept nagging me about him.One evening Dakota stopped
breathing.I started CPR my daughter ran for a nurse who lived down the street.We
took him to the hospital and they said"he couldn't breath on his own.Saying he
just didn't remember to and we had to get a breathing machine for him.We watched
him very carefuly and at one of his check-ups they told us he was blind.Ok,we
can deal with this,but the didn't seen to be working right and Dakota was back
at the hospital ICU where he was dignoised with SJS.Our whole family from all
states went to LVMC(Las Vegas Medical Center)We lived at the hospital(his great
grandparents-grandparents-mother ,Aunts,Uncles) quite a crowd.The doctor told us
after about a week he was going to be ok.We went home(california-arizona).I no
sooner got back to Arizona and got a panick call from my daughter Dakota took a
turn for the worse.I jumped an American West(they were fantastic in helping
me)and went back to Vegas.I didn't make it Dakota Passed twen minutes before the
plane landed.The poilet came to take to me(I already knew somehow I was crying)
he said" I would be the first one off the plane and they had a little cart aand
a cab waiting.I got to the hospital as the medical examiner got there. My
daughter refused to let them take Dokata before her father (we're divorced) and
I could say our good-byes. Dakota suffered for about three months with tubes
everywher in his tiny body.Gor the longest time I regretted giving him CPR
knowing he would of been better off if he had left us right away,but we had him
though Christmas.He was our little angle.SJS is a horrible thing to go through.I
still cry today thinking about watching him slowly suffering and dying.I pray no
one will ever have to go through what we did.Yes we are all stronger how,but the
sadness remains.I have thirteen other grandchildren ans a great-grandbaby on the
way.I am so very fortunate to have then all,but I still miss Dakota and wonder
what happiness his life would be.Please find a cure for any other child that
could get this.Thanks Sherrie D. Cheeks
Name :: Jane
Story :: When i was a baby i had sjs. The doctors though i got it from an MMR
injection. My parents havent told me much about it or showed me pictures. I want
to wait until they are comfortable with it. i am now going into highschool...
Name :: Lori Estes
Story :: I wanted to say that after viewing your web site, you are certainly not
alone! Doctors may think that this syndrome is rare but I think like you do, it
is much more common than they think.
I had an outbreak of Steven Johnson's Syndrome in 1998 after taking Cipro for an
infection. I had taken this medication many times prior to this with no
problem. It turns out that allergies can be developed any time, to anything,
drugs included.
I picked up a new prescription for a UTI infection. Within an hour after taking
the first dose from the new prescription I felt "itchy" on my neck and back. I
checked in the mirror and found that had large red "hives" just about everywhere
on my upper body. I did not take another pill. I knew this was an allergic
reaction. It turned out to be a very smart thing on my part. By the next
morning my entire upper back, neck and upper chest looked badly sunburned.
Then I got the rash, which turned into painful bumps. Some of those looked
exactly like red and white targets. The bumps were painful and were up on my
face, neck, stomach and chest. They also showed up in strange places like my
upper thighs, calves and feet. I also got a fever, felt very ill and tired and
coughed a lot. It was a lot to take all at the same time!
My Internist sent me to a Dermatologist, neither of them knew what to do except
give me steroids. They seemed to make me worse rather than better. In a month
or so I got better on my own.
About a year later I showed the scars and told this story to my old family
Doctor. He was the first to tell me what I had really had wrong with me.
Well, that's my story. I was lucky. I only got some scars and a little loss of
lung function. Good luck to everyone. I hope if there is someone else out
there with facial/neck scars they will feel just a little less alone. They do
turn pale with time and blend in fairly well if you stay out of the sun.
Lori
Name :: Phyllis Duncan
Story :: My husband, John, had what we thought was flu like symptoms. On Sat.
night he had chills and fever, Sunday he had a really bad headache, all of his
joints ached, the palms of his hands burned, his throat hurt and burned. These
symptoms increased through Wednesday when he had a rash to appear on his
forearms and his lips swelled. His palms were very red. Within a few hours his
throat swelled shut and he was having throuble breathing. He went to our GP and
was given a shot of epinephrine and steriods to take by mouth. The shot opened
the airway, but the rash continued to spread and started turning purplish. By
Thursday evening his chest, back, knees, soles of his feet, ears, face, inside
his mouth, genitalia, the backs of his hands, and his fingers was completely
covered with rash. The rash felt like he was burned. He could barely put his
feet on the floor to walk, and not without great pain, he couldn't eat or drink
without it feeling like he had hot pepper sauce in his mouth, even water burned
his mouth. He went back to the doctor on Friday and was put into the hospital.
They began treating him with doxicycline and prednizone IV, also fluids. His
skin blistered and got worse for about 2 more days before it started improving.
Then it started improving. The improvement didn't look like improvemnt. As his
skin started peeling off, it looked pretty bad. It was touch and go for about 3
or 4 days. And we didn't know what was going on with him, the doctors were
telling us they were stumped. They are still saying they were stumped. Some
said it was SJS, others said no it wasn't. He had taken 4 doses of Relafen 2
weeks prior to the break-out. We feel that is cause of the SJS. He had a
diagnosis of rocky mountain spotted fever also, but he hasn't had any ticks on
him in maybe 9 years or more. The tithers have been the same before treatment
and after treatment. The blood work and skin biospy have been sent to CDC. We
are at a loss. His eyes have dryed out, he uses artificial tears to moisten
them. But but conflicting diagnosis, we can't get any help. He has been out of
work since July 29, 2004 from a fall at work and he really wants to go back to
work. But his neck injury (and surgery) still has him in alot of pain, then
this came along and added to his problems. Not only is he in alot of pain, he
is ready to give up on everything. He is angry, his patience is very short, and
he doesn't want have intrest in anything anymore. If anyone can give us any
advice, we could use it.
Name :: aws alawneh
Email_address :: rain_poet2003@haotmail.com
Story :: hi my name is aws alawneh my life like yours life painful; full with
sadness and cryings hearts but with no TEARS.
my story begins when iwas 10 years old in summer vacation
on friday morning i wake up with eyes pain,my eyes was red color iave headche my
father tkae me to general doctor he gave s me a eye midaction but with no use
,aterday mornong my mather take me to eyes doctor he also gave me a wrong
theraby becuase the diagnose was wrong and my eyes get worse and worse
;sunday(3/7/1994) came on and i get worse my mother took me to the hospital at
sunset ,they put me in room
and in the morning eye doctor DR FACHREY SALIM AL-HAMOURI tell my mother that i
have sjs ;my mother dont no what is sjs .but all what she know criing for me my
mouth get the sjs ;the doctor put me in very powerful programme for 2 weeks i
have to see hime 3 times every day i have lot of drugs ;but the sjs cuase dry
eye syndrome ;since that time until now i live in suffring and sadness .
my age now 21 years and i wish some day cring form happiness with tears my
father pray to god every day to hail me
Name :: cotter 2005
Story :: i was placed on 100 mg lamictal in nov 2004. it was for mood disorder.
in dec 2004 i went thru two oral surgeries. i am a severe diabectic using an
insulin pump. my dr's were very careful on my medical treatment. i received
antibiotics before and after surgery. as a diabetic, i healed a little slower
than normal. all went well for a week or two. i made an appointment with my
endocrinologist because of rash and swelling of both legs. my sugars were
running too high. he gave me more antibiotics . the rash became better on my
lower legs. at this time i started having rather severe backpain.( felt like
labor pains) i began to have bladder spams and was put on more antibiotics. i
notice that when i would shower, i would break out in hives. i developed a rash
on my back right shoulder. it was uncomfortable. i am really felling awful,
losing weight,ect. while showering i notice rather large painful noduals in the
vaginal area, i felt chilled, sugar unstable, ect. at this time i made appt.
with a n ob-gyn. he exam. me and said he had no idea what was wrong. gave me
antibiotics a cream for vaginal discomfort. problem seemed to get a little
better. two weeks later i was awakened in the night with pain, itching,and
swelling in the genital area. he talked about doing a biopsy, decided against
it and ordered blood test for veneral disease. all were neg. he again stated
that he had no idea what was wrong and i should see a family practice phy for
further test. i did this with my list of symptoms in hand. i was still losing
weight felt terrible and could not stabilize my blood sugars. he ordered every
kind of cat-scan that can be done on a person. i had started having ashma
attacts with any exerction. still losing weight. i lost 40 lbs, all total. the
endocrinologist reset my pump. expressed concern for my health. I reseachered
all medications that i had been taking on the enternet, this is when i found
the side effects of lamictal. I was told by the dr. that prescribed the med to
watch for rashes. i was told that it was safe but to stop taking it if rash
occured. my rash was diagnosited as a type of blood poising from the initial
surgeries. went right by me. i did not even consider that the lamictal was
the culprit. I am now with a skin specialist, he has done a biopsy and
cultures. i broke out again less than two weeks ago. sorry this is so long, so
much has happened to me this past 8 months, i am wondering if this could be a
mild sjs??????? would appreciate any feedback from any one with similar
symptons thanks stogie-cotter
Name :: Charles
Email_address :: byarsc@hotmail.com
Story :: My story starts when I was in the 11th grade. I was a popular, good
looking guy. I was an athlete. I led my county in stolen bases and runs scored
in baseball and was second on my baseball team in homeruns the year before all
this happened.. I was about 5'9" and weighed 175. I was twisted steel. I
would give anything to get back to the shape I was in. I don't mean to sound
like I am bragging on myself but I am telling you these things because they are
part of all that was taken away from me in a matter of days. I had a nice
complexion, olive skin, a few pimples here and there but overall there was
really nothing wrong with me. I was just a self conscious teenager. I was
prescribed some medicine for the acne and the doctor (Anne K. Gerald) gave me
bactrim, I think it was. She gave me a month supply and told me to come back
and get a refill when that was gone. After only about 10 days of taking the
medicine I woke up one Saturday morning with small blisters inside my mouth. I
called me mom into my room and told her what was going on. I called in to work
and decided to lie back down. I woke up about 30 minutes later and the blisters
where already moving to the outer part of my lips. Again, I called my mom and
we went to the clinic in my hometown. They had no idea what was happening.
They gave me some medicine and hooked me up to an IV with fluids and asked my
mom to let me stay with them for the next few hours. By midday the blisters
where around my nose and ears and they were starting to form on my hands and
feet making it hard to walk. The doctors at the clinic told me it would be best
to go home and get some rest and they would call me when they found something
out about the blood tests. So I went home and about three hours later I was on
my way to the hospital. The doctors at Brookwood had no idea what was going on.
They took blood and gave me a few shots of steroids (which I hear is not the
thing to do) and told me that I could stay or go but there was really nothing
that they knew to do. So I went home and by this time it was time to go to
sleep. I woke up about 6am and it was awful! My mom got some advie from
someone to take me to Children's hospital and since I was only 16 I could still
go. When we got there they knew exactly what was wrong. They hooked me up to
IVs and started pumping fluids and taking blood. They told me all these
statistics and possibilities. I was a little scared but my mom was taking it
worse than anyone. I was in there for about 10 days. I had to have my eyeballs
swabbed with some sort of lubricant. I was fed through a syringe because I
couldn't open my mouth wide enough to fit a spoon or fork. Once one of the
nurses put a gauze on my lips to keep the blisters from seeping and when I went
to sleep the gauze fused to my lips and when they pulled it off my lips bled for
about 5 minutes. I still have some pretty bad scaring on my lips. I lost all
my fingernails and toenails (they grew back) and my 175lb frame shrunk down to
just barely above 140lbs by the end of my month and a half ordeal. The doctors
told me and my mom that I am lucky to be able to see. They were telling me the
whole time that there was a good chance I could go blind. After getting out of
the hospital and getting home all I wanted to do was sit on the front porch and
drink tea through my syringe. I finally got back to school after about a month
and everyone wanted to know about the ordeal. I was glad to tell them. I made
the baseball team again that year but didn't do much as far as production. It
took me a year to get back to "full" strength. I won Homecoming King (the first
in the history of my school) my Senior year. I am still not where I once was.
I am a little taller, 5"11" and weigh in at about 165. My scars are gone for
the most part except on my lips. Most of my body has tanned over pretty well
and covered up any signs of the reaction. It has been seven years since my case
and to this day I still stay away from medicine. I am now 23, married to my
beautiful wife and we have the most handsome 2 year old boy in the world. The
reason I am decided to share this is because me and some friends and family were
talking over the 4th of July and I was telling my story to some people who had
never heard it and they asked me why we didn't try to file a lawsuit. I just
told him "I don't know". That got me wondering if there was a "survivor" forum
where people share stories. This is mine...
Name :: Melissa Burt
Story :: My father contracted SJS, although we were unaware of what he had. He
had first contract MSRA staff infection and was put on an IV of antibotics. He
then contracted entercoccus staff infection and put on another IV of antibotics.
The hospital (VA Medical Center in Cincinnati) would not allow him to stay there
to be treated and gave him a central line and sent him home for us to give him
the IV treatments.
Before the staff infections had been found my father had went in for a routine
check up on his bladder cancer to ensure it had not returned. As part of the
routine check up they put him on 3 days of a sulphur antibotic, which had used
in the past with no reaction.
He had been on the IV antibotics for 4-6 weeks when he started getting a rash
feeling unwell. We took him to the emergency room where they admitted him and
put him in a private room and continued to give him antibotics. The doctors were
baffled and did not know what was wrong. They took 5 skin biopsys and then we
were told he was much better we could come and get him and take him home. We
refused, but when we came to the hospital the next day, we found him in the ICU
unit.
The MSRA infection had attached to the leads of his pacemaker and no way to
remove it. The SJS was attacking his internal organs and he not only sloughed
the skin on the outside, he was beginning to slough on the inside. He was dying
and the hospital sent him home to us as they didn't want him there to die. He
was brought home on Thursday afternoon and by Sunday night he was dead.
This is the worst disease I have ever seen on anyone and makes me afraid to take
any drug because you may not have a reaction to it the first time it was taken
but years later, it is possible to develope a reaction. My father was 62 and
very young to die from such a horrible disease. I miss him every day and cry
everyday.
Name :: Darcella Crawford
Email_address :: crawforddk@ornl.gov
Story :: Michelle Darcel King Weaver, 30 died of SJS June 27, 2002 at Vanderbilt
Hospital in Tennessee. She battled SJS for 6 weeks. She left behind 3
beautiful children, who miss her so much.
Name :: penny
Story :: I am presently recovering from SJS. On 2 Fridays ago, I had started
taking a weight loss tablet to control my weight. What happened after that has
made me sure that I will never eat any more weight loss tablets in the future.
On Saturday morning, I took one more weight loss tablet just before I had my
breakfast. Before I went out at noon, I took a bath, and was surprised tht I had
some rash on my shoulders. I simply brushed it off as a food allergy as I've
always had episodes of hives breakout before. I thought that the allergy will
subside after a day. However, as the day went on, the rash slowly came on to my
body, on my torso, both my arms and my back. I continued to take the weight loss
tablet that Sautrday night before my dinner.
On Sunday morning, I started having rash on my face, and I thought to
myself,'Wht if its the weight loss tablet tht caused all these reactions?' I
went to the General Practitioner in the morning, and he advised me to stop
taking the weight loss tablet straightaway. He prescribed me with Atarax, a
steroid, and told me that this could be a drug allergy even before I told him
about my intake of the weight loss tablet. That whole Sunday, I was not able to
rest much or eat much as my lips had started to grow blisters. I felt like my
whole body was on fire, and was constantly scratching myself to relieve the
pain. By night time,both arms and body had blister like formations on them. I
couldn't sleep much the whole night.
On Monday, I was shocked tht my whole face had blister like formations on it,
and my oral cavity was full of ulcers. I went back to see my General
Practitioner, and straightaway, he told me that I have SJS, and have to be
admitted to hospital. In the hospital, I was put on a IV drip, and was given
alot of steroids intravaneously and orally. I was in the hospital for 5 whole
days and my blood pressure,heart rate and body temperature was observed at a
regular interval.
I'm now healing, and am on a daily dosage of steroids and my body is slowly
healing from the physical scars of SJS. I've just gotten out of the hospital,
and after reading all the SJS stories, I'm thankful tht my General Practioner
saw the severity of my allergy and advised me to be admitted to the hospital
asap.
Name :: PATRICK TAYLOR
Email_address :: taylorpatrick@msn.com
Story :: I HAD SJS WHEN I WAS ABOUT 10 IN 1982.I WAS ONE OF THE FIRST 25 CASESAT
THAT TIME.IT STARTED OUT AS A COLD THEN PROGRESSED INTI THE FLU AND THEN
PNEUMONIA.BY THEN MY CONDITION WAS WORSENING I STARTED TO DEVELOP RASH ON MY
BODY.THIS HAD ALREADY BEEN GOING ON FOR A WEEK OR TWO.THE THE DOCTOR DECIDED TO
SEND ME TO VANDERBILT CHILDRENS HOSPITAL IN NASHVILLE.THERE CONDITION GOT WORSE
AS THEY HAD NO IDEA WHAT WAS WRONG WITH ME.THE RASH BEGAN TO SPREAD IN MY
MOUTH,THROAT AND ON AND INSIDE MY PRIVATES.I COULD NOT EAT.IF I TRIED TO EAT IT
WOULD JUST BURN.THEY TRIED AN IV BUT MY ARM SWELLED AND THEY HAD TO DISCONTINUE
THE USE.I BASICALLY SURVIVED OFF OF MILKSHAKES BECAUSE MY MOUTH WAS SO SWOLLEN
THAT A STRAW IS ALL THAT WOULD FIT IN MY MOUTH.I HAD TEAMS AMD TEAMS OF DOCTORS
THAT CAME IN TO LOOK AT ME.I WAS IN FOR ABOUT TWO WEEKS WHEN THEY HAD DECIDED
THAT IT WAS SJS AND THAT I WAS THE 23RD CASE.THERE WAS NO CURE FOR IT,IT HAD TO
JUST RUN ITS COURSE.IT TOOK ME ALMOST A YEAR TO GET COMPLETLY OVER AND TO HAVE
THE ENERGY TO EVEN GET OUT OF THE BED TO DO ANYTHING.I STILL HAVE SOME SCARING
BUT NOT A WHOLE LOT.I BELEIVE THAT IS EVERYTHING,I AM SURE I LEFT SOMETHING OUT.
THANKS
PATRICK TAYLOR
Name :: Cheryl Edwards
Email_address :: cheryledwards174@hotmail.com
Story :: I have been diagnosied four times in my life with SJS. I am now 22 and
the last time I experienced the disease I was 13 and so this is the time when I
remember most of what it felt like. The other 3 times I was very young, I think
as far as I can remember aged 3, 4 and 7. I never knew anything about the
disease until now, after visiting this web site. It wasn't even a confirmed
diagnosis when I was younger as the doctors were not sure and had never seen
anything like it before.
Luckily, each time I had the disease it was not so serious as most of the
stories I have read. I never realised it was a life threatening disease and that
it had a 50% - 60% mortality rate. I feel much happier now I know more about the
disease and its implications thanks to your organisation. I continue to be
afraid of most medication and will not take anything unless it is absolutely
vital, I would rather grin and bare the pain than experience again that what I
did when I was 13. My thoughts and prayers go out to those who have ever had to
experience and deal with this horrible disease.
Name :: Lillian
Email_address :: trousdalefamily@earthlink.net
Story :: Thank-you for this site. My young psychiatrist just recommended the
bipolar med whose main side effect is
SJS... and I am severly allergic--to nearly everything! Yes, this is America,
July 2005! How reprehensible! Here I am, with a doctor that thinks everything
can be cured with a pill. Isn't this a poor reflection on our society? I am a 50
year old working woman, needing help. She would rather give me this dangerous
drug than a little tranquilzer I have been using
in the past that has worked well.(Gee, makes me wonder what kind of kick back
she may be getting from the pharmacutical company? uhm.)I have no choice but to
seek another doctor.... and I am suffering..because she has already threatened
to have me commited..and why?..because I was stupid enough to be honest with
her.... yep stupid.....)
Well thanks for letting me vent....Geez!
Name :: Laurie
Email_address :: lthomp7392@aol.com
Story :: Hi,
I can't tell you how much your web site means to us. My 12 year old son had SJS
in Feb. 2005 it has changed our lives. He is doing well and we are so thankful
for that! I truly believe that DR.'S need to be more aware of this. We took him
to the Dr and the ER twice before I went to Children's hospital and they
diagnosed him with SJS. A drug called “Trileptal” that he was put on for a mood
disorder caused it; needless to say it didn’t work! I would like to share our
pictures from his reaction to the drug. Would you help me with that?
Sincerely,
Laurie
Name :: Grace
Story :: When I was nineteen, I was prescribed a month long course of
doxycycline, an antibiotic similar to tetracycline. I had been having joint
pain, burning sensations on my skin, and a slight fever that they eventually
determined was probably due to Rocky Mountain Spotted Fever as I had been bitten
by a tick, and my test came back possible but inconclusive.
After starting the antibiotic, I began breaking out in a rash over my upper
body. Within a few days, my face was affected and I developed sores that
resembled cystic acne. What followed afterward was nothing less than ghastly.
My entire face neck and chest erupted in pus filled sores. Under my eyes, I
developed pus filled blisters which broke and exuded fluid. My mouth was filled
with painful sores. I went back to the doctor and they told me I had a "skin
infection" and placed me on erythromycin as well. I was also given a paste to
place on the 20+ sores in my mouth. NO ONE EVER BOTHERED TO MENTION/SUGGEST I
COULD BE HAVING A SEVERE ALLERGIC REACTION!! My body ached, I developed a
fever, and remember vomiting one night.
Thankfully, I decided that what they were giving me was not working. I stopped
everything, and basically laid in bed three days. The extreme pain stopped, and
SLOWLY the sores began to heal. It took a month for my skin to look somewhat
normal again. When I started getting mouth sores and pustular acne the next
time I was prescribed erythromycin, I big "ah ha!" went off. Unfortunately,
just a day's worth of medication blessed me with three to four weeks of skin
erruptions/sores. Oral antihistimines did NOTHING. Despite not having a
problem with them when I was a child, since this reaction, I've found I can no
longer take several difference classes of antibiotics: cephlasporins,
quinnolones, macrolides, and of course, no tetracycline derivatives. No Z-pac,
no Cipro, no Ceftin, etc, etc. Weird thing is, I CAN take "cillin" drugs. I am
also allergic to a host of antidepressants, something I found out in my late
20's. (I'm now 38.)
Thankfully, if I start getting a reaction, a steroid shot seems to immediately
improve my situation. Still, I am VERY cautious when dealing with medications,
and find that I have to REMIND the doctors regularly about my allergies. I
didn't realize how many people out there had similar and quite frankly much more
dramatic stories than mine. Makes me feel not so alone!
Name :: Jonathan P. Thompson
Email_address :: thompson437@msn.com
Story :: Hi, my name is Jonathan and I was diagnosed with SJS last year on August
7th. I celebrated my one year anniversary yesterday with my family and we all
celebrated my son Nicholas’s 2nd birthday. It was on his first birthday that I
was taken to the ER with flu like symptoms, along with swollen eyes and throat.
I did not develop SJS the typical way, it progressed over several weeks,
starting with the flu, dehydration, then swelling of the eyes and throat. I did
not develop the rash until about a week into the hospital. I was taking
Lamictal 100MG a day for about 4 weeks. This is what they decided had triggered
the reaction.
When I was admitted to our local hospital they had no idea what they were
dealing with. No nurse would come within 20fr of my room for fear of
contracting my symptoms. By the grace of GOD, my wife is an RN in the Neonatal
ICU at the same hospital, so she was able to provide the care I needed during my
stay. As the first week went on, my symptoms got a lot worse. I could barley
swallow, my rash was getting black and blue and they were starting to break. It
wasn’t until Thursday night that my psychologist was informed of my situation
and she immediately called the attending doctor to tell him it was SJS. They
were still stumped, as many local ER doctors are when presented with this
syndrome.
That next morning they started me on IVIG, and began the search for a city
hospital (Boston, MA) that could treat me with the experimental IVIG, luckily
only one hospital would, Tufts/New England Medical Center. On Saturday morning
I was transported by ambulance to Boston, where I stayed in ICU for about 7
weeks. I do not remember my first 5 days at NEMC, I have been told afterwards
this was my most critical time and that they were preparing to give last rights
since I was not getting better. Again, by the grace of GOD, he gave me another
opportunity at life and I turned the corner to getting better. I took several
weeks of intense physical healing for me to be able to go home. At one point my
right eye was legally blind and my left eye was almost as bad. Today, I have
20/20 vision in both eyes, but have lingering dry eye. My immune system is
completely shot 6ft under and I seem to get sick a lot easier now.
I never progressed to TEN, due to the heavy doses of IVIG, thank GOD.
There is light at the end of the tunnel, you need to have faith and it will
come. I am available through email at Thompson437@msn.com. Thanks
Name :: kshira reddy
Story :: This came to us as a shock... it happend in july .. my brother was the
one who gt struck by it...
my exams where goin on and i was busy preparing for them, dad
works fr the airforce and he was posted in mumbai. mom n bro wher the only ones
at home that evening... we thought of it as sum viral fever which was very
common during those days . mom had given him medication.
but as days passes by the fever never came down and we wher worried about
it... mom took him to the doctor n he said it was viral fever and gave him few
medicines.
my bro started the medication but of no use the fever still stayed.. one
evening, i went to my friend's place to study fr the exam next day, leaving my
brother in my moms company. my brother was having high fever his whole body was
shivering,and we could find red boils allover his chest and also on the
backside of his body.. his lips started to swell wid boils all over them,he
couldnt take in the medicines anymore. mom was tensed and immediately took him
to the doctor. my bro sishir was undergoin treatment for a minor urinary tract
infection few days back, he was prescribed a drug called BACTRIUM. he had
already taken20 tablets. It was because of this tabvlet that my brother gt
reacted with the stevens johnson syndrome. he was admitted in the hospital that
very night. next day after my exam when i went to meet him in the hospital i was
in a state of shock to see his body turn dark black colour with blisters all
over his body even on his face. my mom, me n my gran mom wher all in the
hospital very upset. my dad was informed to come immediately. sishir was in a
very bad state ,was kept on steriods n on glucose since he cudnt eat anythng
nor drink. slowly his fever subsided but the blisters still remained . Thank god
he did not have a dry eye syndrome which would lead to blindness. his was in
the earlier stages of SJS. he healed slowly within 15 days.. he was kept in the
hospital for 15 days. now my brother looks fine with still few scars on his
face and hands which would take a months time to heal. He is attentind his
school and his back to his normal self. we thank the doctors of apollo hospital
for giving him good medication and taking care of my brother.
i have read many peoples stories to sishir it makes him feel not so
alone!!! Thanks for listening to our story.. sincerely kavitha/ kshira.
Name :: Karina Taddei
Email_address :: karinate@yahoo.com.ar
Story :: My name is Karina. I'm from Argentina and 2 months ago I was taking a
medicine called Carbamazepina because I had panic attacks frecuently.
Nobody knows what was happening to me, because I was sick like varicela. After
one week (and because I was still sick) my mother and friend called to Urgencies
and they sent me an ambulance.
I had been hospitalized 2 months (42 days in coma) and now I'm just getting well
(skin, eyes)
Name :: María Martín
Email_address :: mariamtv@eresmas.com
Story :: I'm in Madrid (Spain). My mother died 5 months ago. The doctors told us she
had Steven Johnson Syndrome. It was horrible to see how she suffered and nobody
told us what to do. The hospital was so lost...And I lost my mother, who was 59,
a very healthy and strong woman, in 11 days, and my family and me, we are asking
us yet if it was possible a solution and not the death.
She went to the hospital with the first symptom.
The guilty medicine was Feldene flash. She sprainned one's ankle and the
doctor prescribed her this medicine.
What can we do now because we feel so bad, so impotent. You loose your mother
and you cannot do anything for her.
Many thanks
María
Name :: Virginia Westerby
Email_address :: virginiawesterby@hotmail.com
Story :: My 5 year old daughter is currently in the hospital being treated for
SJS. Fortunately, she has a very mild case. Approx. two weeks ago, she had
what we though was 'just a virus' - coughing and fever that lasted a couple of
days, then I thought it was gone.
5 days after this virus began, she was up all night coughing and hacking and had
a slight fever. We went to urgent care and there she was diagnosed with walking
pnuemonia and was put on Omnicef (antibiotic) and Prednisolone (steroid).
We left on our beach vacation that very day, expecting to see a speedy recovery,
as she is a healthy child. Two days later - her condition was much worse. Her
coughing was uncontrollable and she couldn't eat or drink. Her eyes were blood
red and she lacked the strength to even make it to the potty. She had large
red, flat sores all over her legs. We went back to the ER at a small hospital
on the coast of NC. There they said that she had a viral bronchialitis and she
just needed some time for her body to heal.
Another two days goes by. Her lips were cracked, swollen, and bleeding and the
inside of her mouth was covered with lesions. She still was not eating or
drinking and she couldn't open her eyes. She was even weaker than before and
had a consistent fever.
We took her to a local doctor at the beach and the doctor said she had the worst
case of 'herpes' she had ever seen. She was ready to send us out the door with
the 'wait and see' advice, when she decided to have the pediatrician look at
her. The pediatrician immediately knew what it was and sent us to the nearest
Children's hospital. We stayed there for one night before they flew her to UNC
Chapel Hill Burn Center.
She is still at the Burn center, and is thankfully out of the ICU. The worst is
over and now we just help her recover.
She had been on Bactrim for the last three years for her urinary reflux
condition. The ped. dermatologists, however, think the SJS was caused by a
virus or bacteria, and was not the reaction to the Omnicef antibiotic prescribed
for her 'walking pnuemonia'.
Name :: bonnie adkins
Story :: Hi,my name is bonnie.I'm 49 years old.This past January i was diagnosed
with SJS.This is now August.First,and foremost i would like to say Thank You to
God and alot of friends for their prayers on my recovering from this awful
ordeal.I was put on the antibiotic avelox for a bacteria infection.I
unfortunately was able to take it for the entire 10 days before the reaction
surfaced.Just when i thought i found a antibiotic that i could take,boy how
wrong i was.You see,back when i was 17 i had a severe reaction to pennicillin,i
had the sores all inside my mouth and my lips.I went without food unless it went
through a straw for two weeks,so there was a lot of pudding and soup.In between
those years i had a reaction to septra which was just a rash that went away in a
week or so.Erythromycin was the same thing.So in January i thought after taking
the avelox for the 10 days i thought i finally found an antibiotic that i would
be able to take.Late on the 10th day i guess you could say i got a cruel reality
check.I found blisters inside my mouth which i thought were because my teeth
weren't very good.Then the rash started on my legs,arms,face,and my back and
chest.Pretty much all of me.I started getting blisters all over my lips.I went
to the hospital and they said i had a reaction to the medicine,duh.They released
me and i went home.Please try to understand something else also.I had just
gotten married on Sept.4th.So my very new husband,which i have repeatedly
thanked God for sure didn't bargain seeing me looking like a monster. He told me
that i was still beautiful to him.Anyway,when he took me home that night from
the hospital i needless to say had an awful night.I started swelling up so
bad.My hands swelled up until i had no circulation in them.When he got me back
at the hospital the next day,they had to literally cut my rings off,which wasn't
easy by no means.This time though a doctor that i refer to as my Angel diagnosed
me first thing and admitted me.I was there for 3 days.He was fantastic,his
knowledge and compassion was remarkable.He took excellent care of me and even
though he didn't want to release me because he was scared of my skin getting an
infection in it and because of the way i looked he did allow me to go home on
the 23rd. of Jan.It was my sons 23rd birthday and he had only been home for 2
weeks from being overseas with the military for 11 months.I did have to promise
to be back the next day and only have a couple of people,very close family and
friends around me.But,i would like to tell you all that i am doing so much
better now.I guess the splotchy skin might never go away but i have so much love
and support from my family and friends.I'VE BEEN TRULY BLESSED TO HAVE SURVIVED
THIS SJS.I pray for all survivors and their families.May God Bless You All.
Name :: Jess
Story :: Hi there,
I just wanted to let you know that I just picked up a prescription for an
antibiotic. IN the pharmacy leaflet, it specifically mentioned Stevens Johnson
Syndrome. Since I had never heard of it, I did a google search and found you.
Perhaps your educational efforts are paying off as I have received many
antibiotics in the past but never seen this kind of warning before.
Thank you for your activisim.
Jess
