Name :: Linda Daniels Carter
Email_address :: lindaprayer4life@aol.com
Story :: I am thankful to my sister who made me aware of the website on SJS. I am
fair skin and I have discoloration over my entire body.When I was 7 years old
(46 years ago) I was hospitalized for 2-3 months with blisters over my entire
body,(which resulted from a wrong drug I was told) because of the blisters I
could not open my eyes but I could recognize voices of those who visited me. My
mother did not discuss what had happen to me in whole but only in part because
it was hurtful for her to talk about my illness because I was given up to die.
I do remember my mother nourishing be back to life by sitting at my bed side
feeding me until I regained strength. When I was discharged from the hospital in
1959 I think I was told that I had Johnson and Johnson but on today August 31,
2005 my sister stated during a conversation she and my mother were having in
reference to me, my mother said the doctors diagnosed me with SJS. I remember
coming home from the hospital and upon my arrival my family members staring at
me because I had scars all over. I thank God that when I returned back to school
I had the same friends and they have been with me for life. I got stares from
others at school and did not get picked on a lot but oftentime felt rejected.
There are times when I feel that a missing piece of the puzzle of my life is
still lost but I have dealt with my mishaps very well. I have often times
wonder how it would feel to have a makeover.
Name :: Valarie Malone
Story :: I am a teacher in the Okeechobee County School District. I so did not
want to try any new drug that when my doctor gave me the starter pack I waited
almost 2 weeks before starting it. I know from experience that my body and meds
do not sync very well.
My mouth started hurting during the week of teacher work days. 8/4/05, I ask to
use the office phone, the one in my room is out of order and long distance can't
be dialed, and was refused. I told the secretary that it was important, I needed
to talk to my Doctor. I would pay for the call. I had credit cards and cash. I
was refused. I tried after school and at lunch on work days. The rinky-dink
pay-phones would not take my credit cards and just ate my change.
I missed my appointment when the rash had just started in my mouth and on my
chest. The students started back exhaustion overwhelmed me. My mouth hurt too
much to eat anything but applesause & bannanas. Now it burns to eat those. But I
was bloating.
To the dismay of our school staff I borrowed a cell phone the second week of
school, was told I had missed my appointment, but to come in ASAP! and stop
taking the lamictal. I had ran out 1 day before.
I saw the doctor on Friday. The rash was all over my front, back, feels like my
stomach, colon and privite parts by Monday. I call in sick, can't get my lesson
plans to go through. My angle of a co-worker covered them. I call the Dr. He
tells me to get to my Gpractitioner, hospital or emergency room immediately!
That was a week and a half ago. I don't think they know what they are dealing
with after looking at your web site. I'm very scared. Has mental confusion come
with this too. I don't operate on full throttle or make the best decisions.
I sleep a lot. Nothing tastes any good. Everything including water burns going
down. Oh, and yesterday! my doctor perscribed something to help stop the
itch!!!!
I know this is nothing compared to what other's have suffered. But please pray
for me. I'll remember to pray for you too. I did read that it takes a long time
to kill me so I have a pretty good chance.
Here a kicker, my best friend that is helping my sub out at school is taking the
same thing. We have the same body type and up to this point seem to have the
same reactions to drugs perscribed.
How can this be rare with so many people with it.
Name :: Justin Richardson
Email_address :: jad63@aol.com
Story :: I am a 42 year old male with 2 daughters that live with me full time. I
aquired SJS in May 2005. The rash began on my arms, face and mid section. I
originally thought it was a bad case of poison ivy. I went to a local emergency
care facility and was given a 7 day Prednisone pack. By the 5th day of treatment
the rash had doubled in area and began to burn. I returned to the emergency care
facility and the doctor increased my dosage to 14 days. Even though I was taking
40 miligrams a day the rash continued to get worse. After my 3rd visit to the
emergency care facility I was refered to a Dermatologist for a skin biopsy. By
this time the rash covered most of my face, my vision was blurred, I had sores
in my mouth and nose and my skin from the waste up was covered and burning
severly. The Dermatologist identified the rash as SJS. My Prednisone was
increased to 100 miligrams a day along with a cream that didn't help. One of the
worst things about the condition was that I wasn't getting any sleep. I was
going on 1 to 2 hours of sleep a night for weeks. Eventually the SJS got so bad
that I was admitted into the hospital. There I received heavy dosses of pain
medicine along with 100 miligrams of Prednisone and various other anti-itch
medications. With the pain medicine I was finally able to sleep. I think the
sleep really helped me heal. I'm told I was very lucky that it was diagnosed
early. I spent 6 days in the hospital and 3 months at home in bed. I had to take
100 miligrams of Prednisone for 6 weeks and slowly taper it down over the next 3
months. Today my rash has cleared up but I'll never be the same. The doctors do
not know what caused the SJS. I'm suffering from severe depression. I have large
purple scars all the way around my waist from the Prednisone. My vision is
blurred. My eyes are always dry and I have severe fatigue. My job paid
disibility but it was a small portion of my full salary. My insurance covered a
lot of the cost but I still owe thousands of dollars that insurance didn't
cover. I'm trying to keep a good attitude but it's difficult. I feel like I'm
never going to recover from this. I hope things get better soon. Thank you for
letting me share this with you. It helps to know I'm not alone.
Justin Richardson, Greensboro NC
Name :: Kisandra Follis
Email_address :: kira.follis@comcast.net
Story :: Hi, my name is Kisandra. When I was 16 I was being treated for an ulcer
and was given Biaxin an antibiotic sometimes used for ulcers. Soon after taking
the medicine I started getting a fever and blisters primarily on my face but
also on my arms, torso and hands. I had problems focusing and staying awake. My
chest hurt so bad like my insides were on fire. The blisters started to burst,
combine and crust. My mother assumed I was having some kind of reaction to the
medicine so she took me to the ER. After 2 hours I finally saw a doctor with
hopes he could make the pain stop. He checked me out and came to the conclusion
I had herpes. Herpes I know, it sounded ridiculous to me too. But thats what he
said so we took his word for it. They sent me home with some cream. The next day
I was picking up my refill for my medication for the ulcer when I just happened
to run into the doctor treating me for the ulcer. He asked what happened to me
and I told him what was going on. I also told him I went to the ER and the Doc
said I had herpes. He suddenly grabbed me by the arm and dragged me to the
office of an allergist who is only at my hospital once a month. He happened to
be there that day and was booked full with appointments. My doc begged him to
just look at me. As soon as he brought me into the office the allergist gasped
like he couldn't believe what he saw. He immediatly called all his student
doctors in the room. I sat there in the chair crying as they lifted my shirt and
looked all over me. Half of them were looking at the blisters while the other
half were looking in books. I just wanted to die I felt like a lab rat. Finally
the allergist said he has never seen it in person but he believes that I had
Stevens Johnson Syndrome. My mother terrified had to have the doc explain
exactly what it was, I didn't really pay attention because all I wanted was
someone to make me better. I was put in ICU and given steroids and fluids and
pain medication. Probably a whole bunch of other stuff, I don't remember I was
kind of in and out. To end my story I fully recovered after 2 months with no
permanent damage, well physical anyway. I have to say I came out of this very
lucky. The scary thing for me is that I am being treated for a bacteria
infection right now. I was given some antibiotics to take but I am very
skeptacle so i looked up what antibiotics they were. Believe it or not one of
them was a derivative of Biaxin, the same medicine that I had this reaction to.
I would of surely had another reaction if I had taken it and not checked. The
doctors are told what happens to me but when many of them see Stevens Johnson
syndrome they don't think much about it. My only wish is that more doctors know
what this syndrome is because if they did they would probably save more lives.
Thank you for reading my story.
Name :: Zoe L
Email_address :: lorcaz@michigan.gov
Story :: My TEN nightmare began when I stupidly decided to take up jogging for my
health. (The ultimate irony) I went for a run and was just cooling down by
walking down the drive with my Basset Hound Fang when I thought I had been hit
on the side of the head with a baseball bat. I did not loose conciousness or
have a siezure but instead just a massive headache. 1 day later I still
couldn't take the pain and went to the ER where I was immediately diagnosed with
a brain bleed.
After 5 fun-filled days in the nerological intensive care unit, where they woke
me up every two hours to ask me questions and tell me to rest (pick one!) I was
moved to the "step-down" unit. That was when I got my first wide-awake dose of
dilantin, fortunately, my husband was in the room and prevented me from leaping
right out of the bed and through the ceiling. The pain from the IV was
unbearable, it was as though I had been given acid it burned so bad. "Next time
we'll give you pills!" the nurse told me which would prevent such a painful
reaction. Now, of course, I realize that HUGE RED FLAGS should have been
popping up SOMEWHERE, but they did not despite the fact that I was also itching
like mad the entire time I was in hospital. In addition to the brain bleed,
they also found femoral arterial brain anurism behind my right eye.
Fourteen days later, I met with my neurosurgeon and asked why I could not drive
for 6 months and had to take anti-siezure meds when I never had a siezure. He
said that if that were the case I should ease off dilantin slowly, going from
300 mgs per day over 5 days to 200 for 5 days to 100 then none. At that time I
didn't realize I only had about 16 hours of normal life left.
The very next day my hands began itching like crazy with little red bumps coming
up between the knuckles. I went to an urgent care clinic and stated that I was
taking dilantin and thought I might be having a reaction. The Doctor agreed,
gave me a shot of steroids, some benadryl and said I would be fine in 12 hours.
12 hours later I could not eat solid food and my throat was on fire and the rash
was spreading. I limped into the ER and rasped that I was on DILANTIN and was
having a REACTION and had already been treated with Steroids and benydryl. One
would think that now the signs of TENS/SJS would be flamingly obvious to anyone
with some kind of medical education. WRONG. They gave me a steroid shot, some
benadryl and sent me home saying I should see my doctor the following Monday (it
was Saturday) if I wasn't better.
Monday I could no longer even sip the nasty take-away chocolate shakes but only
water. I went to my personal doctor and he said "You have had two steroid shots
and benydrl so there is nothing I can do for you."
By Tuesday night all the skin was sloughing off of my ears and I was in total
agony. My husband wanted to take me to the hospital but I figured I would just
get sent away again and said no. By 3:00 a.m. I couldn't take it anymore and we
went. This time they diagnosed me as having SJS, but it was TENS since more
than 30% of my body was blistered and burned. Because I had become so
dehydrated, I kept going in and out of conciousness while they pumped me full of
fluids, I drained a 1 litre IV bag in 10 minutes.
I spent 5 days in the hospital in the kind of pain only someone who has been
burned can even imagine. I did not recognize myself in the mirror my face had
been so badly disfigured with blisters and burns. About 45% of my hair fell
out, my eyebrows fell out, and just taking a shower required shots of demerol
before and after and it was still so horribly painful. The worst, though, was
when my niece saw me and was frightend like I was a monster. I just wanted to
die.
Because of TENS I could not have the surgery for the anurism until I had healed
due to fear of infection so I spent 2 months with a time bomb in my head while
hiding in the shadows of an unusually sunny Michigan summer. I only went out at
night and hated it every time because people would stare at me.
My upper arms are still badly scarred, my face has scars which everyone politely
tells me are impossible to see but I can see them. I had my final anurism
surgery 1 month ago and have returned to work. I still suffer from joint pain,
photo sensitivity and chest pains. I am exhausted all of the time. I did loose
some visual aquity as well but my hearing is still fine.
I am grateful I survived, some days, but oh how I wish SJS/TENS were like Ryes
Syndrome so no one would ever have to share my experience.
Name :: Alfie
Email_address :: cacnam@iway.na
Story :: My stepfather started getting sores in his mouth and his eyes were red
and irritated on Sunday 26 October 2004. First they thaught it was the wind
after a day outside. The doktors then said it was some kind of children's
decease because he started getting blisters on his hands and feet on the 27th.
On the 28th he was hospitilized. The doctor made an early diagnose of Steven
Johnsons Syndrome. My stepfather, Robbert, used a new athritis pill.
Manufactured in Namibia. On 29 October 2004 his face started peeling. His hands
and feet were big blisters. It looked like bags filled with water. A specialist
and a dermatlogist advised my mother on 1 October that he should stay in where
he is.
On this note, I must state that te hospital he was in, did not have an Intensive
Care Unit (ICU) or a Burn Unit. Still they strongly advised her that he stay
there. His feet's blisters brst open when he walked to the WC. He had very much
pain and we needed to get a physio therapist to get the pleghm out of his chest
to make his breathing easier. He was apparently losing his skin on the inside of
his body as quickly as on the outside. It was scary how quickly he degraded.
Every day it only got worse and worse. He was receiving huge dosages of
morphine. His eyes was sore, red and sensitive. It was also one of the wrost
effected areas. Except that I think his body was affected even worse inside.
Through out this whole time he was being his optimistic self. This syndrome must
be the most awefull thing I have seen, yet he remained positive and still tried
to joke to make tings easier on everyone. He looked in the mirror teh first time
during his 6 or 7th day and joked about how handsome he was...
On 5 October they removed the skin from his hands and feet. It was very painful.
Although the dermatologist said we should not break the blisters, he insisted
that it was to painful with the big bags of 'fluid' on his hands. When they did
the hands, the nails nearly all came of too. His body went into shock for a
while because fo the pain of the scaling they did on his hands, feet and back
mostly. His morphin was upted from 1,5mg to 2mg of morphine. He was cold very
easily because his epidermis was of. I would guess that he had lost about 65% of
his epidermis by then. The genital area was esspecially damaged and painful.
When they tried to bath him, it took longer than an hour, in the end he was back
on his bed, with only two drops that touched his legs. It was just to painfull.
When he walked on his raw feetback to the bed, got on the bed (that is a
procedure of a good 15 minutes in itself) he said: "There you go,
Spick-and-span!" It must have been really bad - yet he made light of it.
His breathing worsened day by day and he was nearly unable to swallow by 7
October. He was eating nearly nothing and drinking very little. He was again
taken to surgery to remove some of the dead skin under sedation. Morphine was
increased to 5mg at last. He was in constant pain. Now he was sedated most of
the time.
Saturday 8 October he was much worse again. His breathing was very shallow. It
sounded like water boiling in his chest. His mouth was open all the time because
the blisterring on the lips was very bad and because he was sedated and
struggling to breath. One could see that there were serious problems with his
eyes, they looked hazy and were open all the time now. He probably couls not see
through them at that stage. That evening they told us they were flying him to
South Africa the next day. To a hospital with and ICU and Burn Unit. We had
mixed emotionas about this infromation. We wanted him to get to a high care
unit, but couldn't see how they will be bale to move him as he by then has lost
atleast 70% of his skin... it seemed like a nightmare.
The next morning we arrived early at the hospital. He was concious but could not
speak coherently anymore. He choke on the water my mother tried to give him. At
12:30 they loaded him. And it WAS a nightmare. Finally, they had him in the
plane and my mom got in also. I waved them goodbye suddenly crying hysterically.
He did not make it to South Africa. He died on the plane. They landed in South
Africa, where he was officially announced dead, and then turned back. My mom
flew back with him (his body).
Last year, this time, our 15 days with SJS started. A healthy man, even though
he was 65, was taken in less than 15 days by Steven Jonhsons Syndrome.
This syndrome must be taken seriously and patients must be taken to high care
units as early as possible! Otherwise it becomes a nightmare to move them. Not
just because my stepdad died, but because of the unbearble pain they suffer -
they need high care nurses and specialist to look atfer them 24 hours.
SJS is such a terrible thing to happen and it really is scary to go through and
to stand strong beside a loved one who has it. It must be like walking the road
to recovery with someone that got burned badly. One must then take it day by day
and hope on the future. My heart are with all families walking the road of SJS
or TEN. I cannot comprehent what it must be to have your child go through SJS,
as I see their are many pictures of children and babies getting SJS. God have
mercy.
Name :: H. Kelley
Email_address :: SJS_mystory@xemaps.com
Story :: 54 Years Ago
My story is a second hand story. Although I do remember visiting my father in
the hospital, I was 5 years old at the time and this was 54 years ago. All of
what I know was told to me by my mother who recently had her memory jogged from
seeing one of those tort lawyer ads on TV which mentioned SJS. In a recent phone
conversation with my mother, she mentioned this and I told her I would find out
more using my access to the internet (isn't it grand!). Hence, I am here.
After a week's vacation "down the shore" as we mid-eastern US folks like to call
it, my father returned feeling ill. He was admitted to the hospital. My mother
recalls the symptoms as being large areas of rash with blisters in their center.
Predominant rash was in the mouth, throat and eyes.
I suppose diagnosis was relatively fast for the times. About a week after being
admitted to the hospital he was diagnosed with SJS. My mother recalls that they
were calling it a tropical disease and wanted to know if my father had been in
the tropics or came in contact with a parrot or in contact with someone who
handles parrots.
I suppose that treatment, like diagnosis was pretty much an inexact science in
the early 1950's. For whatever reason, it was decided to treat him with a brand
new drug called cortisone. It was so new in fact that they had to have it flown
in. Perhaps because it was another one of those "wonder drugs" that proliferated
during those times. After treatment with cortisone, there was rapid improvement
and recovery. About 14 days after being admitted he was released. I never saw
any indications on his body of having the disease so I suppose recovery was
total. My mother recalls that the treatment was so novel that it was written up
in journals and he was receiving visits from physicians and other health care
people to witness his recovery.
In retrospect, I suppose it was a drug reaction that caused this. Probably one
of those other "wonder drugs" such as a sulfa drug. My father did have a history
of being allergic (or becoming allergic) to many things and especially aspirin
which would cause an immediate and severe outbreak of hives that would restrict
his windpipe. Also, as strange diseases go, my father had a few of those too. He
succumbed to Shy-Drager Syndrome disease at age 59.
So, when I found this site perhaps you will understand my doing a double take on
your foundation logo, what with parrot's disease being on my mind. Of course the
second look convinced me it was a seagull and not a parrot.
That's "my story." Sorry for lack of specifics but I thought a little history on
this disease would show that it has been around even longer than most the tort
lawyers.
Name :: molly sprayberry
Email_address :: irish4834@yahoo.com
Story :: HI, I AM A MOTHER OF 5 CHILDREN. MY 13 YR OLD SON CODY SUDDENLY
DEVELOPED A FRONTAL LOBE SEIZURE DISORDER LAST AUG. HE HAS BEEN ON SEVERAL
DIFFERENT MEDS WITHOUT ANY CONTROL OF HIS SEIZURES..RECENTLY KEMPPRA WAS ADDED
TO HIS DEPAKOTE AND THAT IS WHEN ALL HELL BROKE LOOSE. HE COULD NOT STAND
WITHOUT FALLING, COULD NOT FEED HIMSELF AND HAD DOUBLE VISION AND ALSO WOULD
RANDOMLY BABBLE. I TOOK HIM OFF HIS MORNING DOSAGE SO HE COULD FUNCTION AT
SCHOOL, AND ONLY GAVE HIM IT AT NIGHT. THEN LAST SATURDAY A BLISTER FORMED ON
HIS PALM OF HIS HAND. I THOUGHT NOTHING OF IT. BY MONDAY HIS HANDS(BOTH) LOOKED
AS IF SOMEONE POURED BATTERY ACID ON THEM. I WAS HORRIFIED TO SAY THE LEAST, AND
HE WAS RUSHED TO THE HOSPITAL. THEY INSTANTLY STATED HE HAD STEVENS JOHNSONS
SYNDROME AND THAT HE HAD TO BE ADMITTED TO INTENSIVE CARE. AND HE WAS. THOUGH
HE HAD NO FEVER, HIS VITALS WERE GOOD..THEY SENT HIM HOME . THEY STATED THEY
COULD DO NO MORE FOR HIM AND IT PROBABLY STOPPED SPREADING. HIS SKIN ON HIS
HANDS WERE SLOUGHING OFF AND SINCE HE HAS BEEN RELEASED, SMALL BLISTERS ARE
FORMING ON THE TOP OF HIS HANDS , UP HIS ARMS TO THE SHOULDER, ON HIS FEET,
ANKLES , AND KNEES. HE STILL HAS NO FEVER, BUT I AM HORRIFIED THAT THIS MONSTER
IS STILL SPREADING. IT DOES NOT FIT THE TYPICAL SJS...COULD IT BE GOING IN
REVERSE? I AM EXHAUSTED, WORRIED SICK AND SCARED AS WELL AS CODY IS. THE
ITCHING AND BURNING AND SWELLING HAS NOT STOPPED. IS THERE ANYONE OUT THERE THAT
COULD PLEASE HELP US?...THANKS FOR LISTENING...DESPERATE MOM....MOLLY
Name :: Vicki Leganski
Email_address :: Ladyvik35@wideopenwest.com
Story :: Fortunately, this is not a story about myself or my children.
Unfortunately, we have just learned over the past 24 hours that a teammate of my
son's has just been diagnosed with SJS. He is 13 years old. He is currently
hospitalized and is not doing very well, to our understanding. I am going to
the prayer site next to pray for Cody but I was so upset when I learned of this
and realized that I have never heard of it! If we were aware, maybe.... just
maybe, there would be something we could do to change the outcome, or at least,
spread the word so that others would be aware of the syndrome and/or the
symptoms.
I have (4) children and a grandchild. All of whom through the years have taken
numerous antibiotics, over the counter medications such as Ibuprofen, Tylenol,
Motrin, prescription medications for various reasons, etc., and, I, myself, have
been on everything under the sun, including NSAIDS for years, and have never
heard of SJS, EVER! To make matters worse, I have worked in hospitals for the
past 8 years (primarily in administrative/clerical positions but, in the ER
nonetheless!) and have prided myself on knowing the medical terms, symptoms,
diagnoses, etc.. But, I have never, ever heard of SJS! I just wanted to write
this message and tell you at the SJS Foundation to keep up the good work! If it
weren't for you, chances are, no one would ever know of this syndrome. If it
weren't for Cody and my research tonight, I would never have known about it
either.
Thank you very much. And, by the way, it took me forever to find anything on
this syndrome, even on line. Most times when I typed anything in, it gave me
different results. Therefore, it's obvious to me that much more has to be done
to enlighten everyone, including on the web! (Since everyone seems to go on
line now for everything!) Anyway, I am going to pray for Cody now and hope that
all of you will too. There is a benefit coming up for Cody, which I hope and
pray will help him and his family, but the one thing that I feel could have
helped him more than anything would have been the knowledge of this syndrome,
it's symptoms and it's treatment. Again, thanks for your information and for
reading my message. Sincerely, Vicki L Oak Forest, IL
Name :: SHIRLEY HIGGINS
Email_address :: shirimae3@yahoo.com
Story :: My sister, Jessie Beatrice Duncan, age 66, a retired school
teacher passed away on November 19, 2004, of SJS/TEN.
This what was listed on her death certificate as cause of death.
I, nor any member of my family has ever heard of this
conditions. Her skin stared visiblly separating from her
body on Monday November 15. she was a patient at a
speciality hospital for CPD, (respiratory). On Tuesday
she as sent to a hospital with a burn unit where she was
immediately diagnosed with SJS/TEN an told she probaboy
would live only a few day, they had no treatment for the
condition. They were correct. FOUR (4) Days later, she was
dead. But what she experienced and what the family saw
and experienced was unbelievable. God, I pray for anyone
who has to suffered through such an ordeal.
We were told SJS/TEN was rare, one in million. I wanted to
know more about my sister's death so I began to research
and found that it is not as "rare" as we are lead to believe.
I am spoken to many people, all nationalities. professions,
including medical, lawyers, everyday citizens and I don't
think I found a single person who had heard of this.
Thus, I begin my campaign of AWARENESS of this terrible
conditions. I want to help! My family is still dumbfounded
over what happened to my sister, Jessie.
Thank you
Shirley Higgins
Maywood, Illinois
Name :: Tamy Trurlow
Email_address :: sjs.tammyjt@hotmail.com
Story :: My name is Joshua Scott and I wanted the whole world to know that
Bactrim almost destroyed my life along with everyone else that knows and loves
Tammy Thurlow. She is a beautiful woman (29) and a outstanding mother of one.
On October 5 2005 5:30 am. she woke me up in tears saying that her stomach
hurt, so we went to the hospital. She was their a week earlier for a UTI. and
was priscribed BACTRIM. (the destroyer)... The ER doctor thought it was a
allergic reaction. They did'nt know how right they were, so they sent her home.
Bye 5:00n pm. she was in excruchaiting pain so we went back agian. By this time
her lips were swelling and she had sores in her mouth. Her genatialia area was
in excruchaiting pain. After 4 hours they clasiffied it as (SJS).
Unfortunatly the hospital we went to had less of a clue than we did about
the disease. I got on line and found out about (SJS). I was mortified by the
info. The world stopped spining. I requested for her to get transported to a
specialist (hospital) . Instead they wanted to play super hero and watch her
condition escalate. The next day they agreed to send her to Boston (Bringham
woman hospital) life flighs. Unfortunatlyat that time the weather was to bad
for flight, so she had a painful 6 hour ride.Why??? the day earlier were clear
skies.
We arived in Boston 9:00 that night. Her condition was worsting by the
minute. They sent her to the ICU burn trama floor, and aministered intravenous
immunoglobulin treatment.
For 4 days her condition escalated. I thought she was going to die. It was
torture !!!!!!!!!!!!!!!!!!!!!! I got online to do some investagation, to my
demise I found out that the drug Co. were PREMEDITATED KILLERS. 1.6 million
adverse reactions, 243,000 hospitalized due to drug reactions, 196,000 deaths
per year. WHY....with no warning
Only 15,000 deaths die from illegal drugs. How about a war agianst
PHARMACEUTICAL COMPANIES ??? Oh, I forgot that money is more imporant than lives
of millions... Even my 2 year daughter. I'm outraged!!!!!!!!!!!!!!!!!!!!!!!!
Well hopefully our lives will have some type of normalcy. Please prey for
us.
Thanks,
Josh Scott
Day 7. The prognosis looks good
Name :: sonia hoyle
Email_address :: soniahoyle@yahoo.co.uk
Story :: I suffered from SJS when I was seven years old. I remember having big
lymph filled boils all over me and about 20 ulcers in my mouth- which made
eating hell on earth. I also remember that prior to the illness I had been very
healthy and had not taken any medications that are thought to trigger the
auto-immune response. Instead I remember 2 weeks before getting ill running
through a field full of braken on Ilkley moor ( after the bracken had been
sprayed in summer). I also know of three other children who became ill with SJS,
all living in moorland areas. I have recently been informed that the moors may
be sprayed again ( article in "Wharfedale" paper)and was wondering whether such
crop sprays have been noted as possible alternative triggers to the disease. If
so-I am very wary of the soon to be sprayed bracken and the effects it may
cause.
Can any help by enlightening me on this subject-or telling me of anyone else
with a similar case history?
Name :: Cathy
Story :: I got SJS from Lamictal. It started slowly, probably because Lamictal
dose was increased slowly. Almost immediately I had a burning tongue. At one
month the skin rash started. But I loved Lamictal - it really worked for my
bipolar. So I kept taking it until at 3 months my eye started burning. By then I
couldn't eat because of my tongue. Genitals were getting raw too. Rash on most
of body.
Had to go to hospital then.
Stopped Lamictal and recovered pretty quick. Still have a swollen eyelid but
it's not obvious to others. And some permanent remnants of the rash.
Now my doctor wants me to start on Tegretol, another one that can cause SJS.
Guess I'll just watch carefully and stop taking it even if it works.
Name :: Joyce Hollstein
Email_address :: joyce.health@sasktel.net
Story :: I have a close friend,age 42, who has been diagnosed with Erythema
Multiforme. Her doctor has booked her for ovarian surgical removal as treament
for this disorder. In light of what I have read on this website this sounds
suspiously like grasping for straws . Do you have an opinion about this? Hoping
for a reply as this very stressful for her family.Thank you! Joyce
Name :: susie orme
Email_address :: susie.orme1@btopenworld.com
Story :: Until I developed SJS it was something in textbooks or a difficult case
in postgraduate exams. Im a doctor and I diagnosed the syndrome myself but no
amount of training could prepare me for the pain ahead.
It started with a headache; I thought I had flu and it would pass. I was
exhausted and went to bed. When I awoke my mouth was ulcerated, my eyes hurt and
I was swollen and blotchy. Within 24 hours my lips had sloughed off and I began
to spit rotting flesh and blood from my mouth. My genitals were swollen and sore
and it was agony to pass urine. I no longer looked like a human being. It was
terrible for my family to watch me suffer and awful for me to know that the
staff who cared so well for me were also physically shocked and repulsed when
they saw me. Two days later I was ventilated which was a welcome release from
the pain.
The overiding memory is one of extreme pain; of feeling that my body was burning
an that someone had poured acid into my eyes. Morphine gave only temporary
relief. I felt utterly beaten by this awful disease. Each time I closed my eyes
the eyelids stuck together and had to be painstakingly bathed apart by the
nurses. The light hurt and my vision was poor. I feared for my sight more than I
feared death.
It is now a year ago. I am recoveriing but not recovered. The nailbeds on my
hands are permanently damaged. There is scarring on my vulva and initially it
was difficult to have sex but with patience this is now better. My face looks
unfamiliar due to the scarring of my eyelids but does not look disfigured as I
envisaged it might. I get recurrent corneal abrasions due to abnormal and
ingrowing eyelashes and am still very bothered by bright light. My tear ducts
have been permantly damaged but using artificial tears as become as routine as
breathing. By some miracle considering the severity of my illness I can see and
if I wear sunglasses can manage to do most things without too much pain.
At the start of this terrible disease it feels as if there is no hope. I am
writing this to say there is hope, it takes time and patience but humanity and
determination can overcome this terrible illness and its consequences. For my
part as a physician I tell any one who will listen about SJS. If I prevent one
of my colleagues from writing an unecessary script and prevent one case of SJS
it will have been worthwhile. If my story can encourage anyone starting on the
difficult road to recovery that will be worthwhile too.
Name :: Stephen Johnson
Email_address :: stevo33@bellsouth.net
Story :: Ironically enough, my name is Stephen Johnson. On halloween this year I
was taken to the emergency room at the local county hospital because I was
itching terribly all over my body. At first I did not know what to think. Then
I remembered that I had used a soap that I had never used that morning in my
shower before school. When the doctor assesed me she said that she was sure it
was an allergic reaction to an antibiotic that I was on, bactrim. She began to
treat this reaction with a shot of adrenaline, it did not help at all. Nothing
she did seemed to work so she called the infectious disease department at
Scottish Rite Children's Hospital in Atlanta. At this point I had an extreme
mixture of feelings, fear, confusion, and I was also miserable because of the
itching that would not subside. Later that day I was transferred to Scottish
Rite. I arrived and was immediately asked why I was not on steroids to treat
Stevens Johnson syndrome. My mother and I both replied that my name was Stephen
Johnson and that there must have been some mistake because we were never told
what illness I was thought to have. They were all surprised by the coincidence
also. I was then given steroids through my IV by the nurse. About an hour
later the doctor, Dr. Steven Shore came into my room in the emergency department
and did not even get both feet in the room before saying that i definately had
SJS. He began to explain the syndrome to my mother and me and continually told
us how lucky we were to have caught it so early. He also told us that he felt
that it was only going to get better because of the early stage and that he had
never lost a patient to this horrible syndrome. Hours later a room became
available and I was admitted into the hospital. I was still feeling scared
about what could happen. The nurses and techs took excellent care of me and
tried to make me as comfortable as possible. I was put on adorax as needed for
the itching, steroids through an IV and and antibiotic through the IV as well.
My condtion seemed to be improving very well and luckily i was reaeased from the
hospital after only four days as apposed to the normal three to four week stay
in the intensive care unit that many SJS victims are forced to endure. After
having this condition my eyes have been opened to the feeling of having a
potentially fatal condition. Luckily i survived unlike many of the unfortunate
sufferers of SJS. I also realized how bad this condition can get for those that
do not catch it as soon as i did: they have to go through weeks of pain
overpowering my level of discomfort from the ithcing alone, they have to deal
with the sluffing of skin and the sores in their mouths and other terrible
symptoms. I feel truly lucky not to have experienced that but I also feel that
it is now my responsibility to those people that do have to go trough it to
share my knowledge, my story, and my insight about this truly terrifying and
awful condition.
Name :: Heather
Story :: My name is Heather Merrick, I was diagnosed with SJS in June of 2005. I
have had three SJS reactions since then. The first time I was taking
Brometane-Dx cough medicine and omnicef. I went to the emergency room were I
was treated for an allergic reaction. The doctor told me it was not the cough
medicine he guaranteed me it was the antibiotic. The next night I started to
burn and tingle almost like I had a sunburn under the surface of my skin. The
pain continued to progress from there. For a week I was in alot of pain. I
could not get out of my bed the pain was just so bad. I have never felt
anything like this I didn't have any blitsters or anything I just burned. I went
to the emergency room to see if they could help the pain. They told me that I
shouldn't be in that much pain and sent me home. Then after the burning stopped
I started to get severe muscle pain in both of my hands. Then I noticed that I
couldn't see as well as I use to. The muscle pain went away after another week
or two. My vision however was not corrected and I now have to wear glasses. The
second time my asthma cough returned and my doctor allowed me to take the cough
medicine again. The next day I had another allergic reaction. The day after
that I started to burn. Everything started all over again. This time I got
muscle pain going up my spin. We had no idea what was going on with me. Until
I went to new doctor and she said it sounds like I have SJS. I was so glad that
I found out what was wrong with me until I went home and did some research on
SJS. I was so scared by what I was reading. I am now in the midst of my
third reaction. This time I took the antibiotic Levaquin. I had the burning
for three weeks, and right now I am still having severe joint pain in my left
arm. While I was having this reaction my doctor tried different pain medication
on me and I happened to be sensitive to them which made it worse. This time I
got small blisters on my chest and a couple on my legs. Since the first
reaction I still suffer from weakness, fatique, and muscle pain in the areas
that were effected. I have also become allergic to alot more things. I hope I
never have to go through this again.
Name :: Kevin Modisette
Story :: My journey began in 1981 at the age of 11 when I suffered what, in
hindsight, was a febrile seizure. I was subsequently diagnosed with epilepsy
and place on Dilantin. Ten days after beginning the drug, I began to develop a
fine, maculopapular rash over my face and trunk along with eye irritation. This
very quickly deteriorated and I was admitted to a local hospital in Lake
Charles, Louisiana. With no improvement after a few days I was transferred to
Texas Children's hospital in Houston. There I spent the next two weeks being
treated as a burn patient. I also had the usual conjunctival disease and
suffered severe visual impairment for a period of time.
Following discharge I continued to have significant photophobia along with skin
discoloration. The skin lesions eventually faded, however, the eye problems
have continued to this day. I have suffered with worsening dry eye syndrome
despite punctal occlusion. This has been complicated by trichiasis and the
associated corneal disease. I have undergone several eyelid surgeries in an
attempt to alleviate the problem but these have been temporary solutions at
best. I am currently planning a trip to the Boston Foundation for Sight in order
to see if I am a candidate for scleral lenses.
Despite these problems, I have been quite fortunate compared to most. I have
managed to graduate from college and Medical school and I currently practice
nephrology in Thibodaux, Louisiana. I am also married and have two beautiful
children. SJS was a stressful period in my life but it was also a defining
period. It was during this time that I developed my interest in medicine and
the rest, as they say, is history. Thank you!
Name :: Brian Gray
Email_address :: brian.gray@viasystems.com
Story :: Hello,
My name is Brian Gray. My wife Julie and I have four children ages 2 months to
5 years. The oldest is a boy and the rest are all "daddy's" girls. Our third
child, Laiklyn, is 14 months old. She developed a rash....better described as
red blotches with some having white dots in the center. Now some have gotten
darker in color and look more like bruising. We took her to Cook's Children's
Hospital Saturday morning. They diagnosed her with an allergic reaction but did
not diagnose Erythema Multiforme. Sunday morning her symptoms, if anything, had
gotten worse. We noticed the bruised look. She had a low grade fever of 99.5
to 100.5. I took her back to the ER at Cooks. The doctors decided that it was
not a reaction to normal culprits...i.e. grass, dog or cat. They diagnosed her
with EM. At first I was OK. At least we knew what it was. However, they said
that it would be hard to pin point a cause. My wife and I have attempted to
sort out the cause but until a few moments ago were baffled....no leads. I may
have happened upon it now. MOTRIN. None of the doctors at the Childrens
Hospital even mentioned it in the line up of potential causes. They listed
certain antibiotics, virus infection, herpes virus, bacterial infection, etc,
etc. They didn't even list the family of pennicilin...which I now see can be a
problem.
We gave Laiklyn, for the first time ever, Motrin about a week ago to help bring
down a fever. We normally use Tylenol. She also had had an antibiotic within
the last week that contained a sibling to pennicilin but after reading about
Motrin and Advil I am leaning heavily to this. What makes me sick is I just
learned of the Motrin connection a few hours ago and Laiklyn has had two doses
of Motrin today prior to this. She is not having any breathing problems and has
been playing as if nothing was wrong with her...except the low grade fever and
the blotches. She looks like she has been dropped in scalding water....I hear
this from others on this site and it is so true. My wife is beside herself now
for giving her more Motrin today. Why would a MAJOR Childrens hospital not tell
you about the possibility of Motrin as a culprit? Especially after you have
told them that your child has a low grade fever? Boy, you want to point a
finger at someone when you see your child in this condition and with the
possibility of further complications.
Question: Since Laiklyn has had no breathing or other serious complications to
this point can we have a little hope that she will not develop SJS?
Thanks for being a sounding board.
GOD BLESS ALL OF YOU THAT HAVE BEEN AFFECTED BY THIS CONDITION.
Brian and Julie Gray
DFW, TX
Name :: Vicky
Email_address :: hambyv@yahoo.com
Story :: Hi! I'm just 17 years old so i don't know some of the exact meds i took
that caused SJS but i'm going to try. in 1996 i was 8 years old and i had a
simple cough. but when it started getting worse my Dad made me go to the
doctor. well the doctor was packed so i saw a nurse practitioner. she
prescried me amoxicillin (it was one of the -cillins) when i took it i got
worse. so i went back and they thought it was the flu so they gave me something
else to take. after about two days my mom called our family doctor and he sent
me on to the nearest hospital. i stayed there for about a week and i started
having trouble so they called the university of tennessee medical center and
transported me by ambulance to ut hospital. about an hour i arrived a small
itchy bump come up on the back of my neck. they thought they had figured it out
. they thought i had chicken pox. then spots came up every where. i spent a week
in a room on the childrens floor and during the week all my rash had become like
boils and my mouth and throat were also covered. then on the last night my temp
went up to 106 degrees. they tried giving me more childrens advil but it went up
again. so they put me on a bed of ice and took me off the advil. my temp went
down immediatley. i was having an allergic reaction to advil. but i had never
been allergic to it before. so they sent me to the pediatrics intensive care
unit where i spent another week. by this time i couldn't talk, eat, walk, barely
see, and the doctors had called my family in to tell them the bad news. they
said i wouldn't make it. they had figured it out. i had had walking pneumonia
and that mixed with the meds had caused SJS. but some how i was getting
better.i recovered enough to go back to the childrens floor. i spent two more
wekks there before i got to go home. UT hospital had not had a case of this in
15 years. i was very lucky to have made it out of that situation. but it wasn't
over. i came home with a list of about 30meds that they thought i was allergic
to. so my parents were very careful. 2 years later a doctor prescribed my
erythromicin and it happened again but this time less severe. it was only in my
mouth and throat. i was only in the hospital for two weeks this time. so after
that i was even more cautious. i didn't take any mediction except Tylenol. but
i only took it rarely. so when i was struck with it again in Nov 2004 it shocked
me. i hadn't taken anything not even tylenol. the doctors told me that it was
stress that caused it. so be aware. if any one would like any additional info or
advice please feel free to email me. i'm sorry to anyone who is going through
this or has been through it. and to anyone who is just researching please be
thankful. its very hard on the person but it is also hard on the family.
Name :: Alex G
Email_address :: agriddine@sc.rr.com
Story :: I contracted SJS at the age of 14 after taking a antibiotic for a
urinary tract infection. About 3 days after I finished taking the medicine, I
noticed small red bumps on my face and lips. Me and my parents thought I was
having an allergic reaction to something I had applied topically. Soon, they
bumps became pus-filled and began to spread to my neck, chest, back, legs, and
even the palms of my hands and the bottoms of my feet. My parents took me to my
physician, and from there I spent a week in the Intensive Care Unit. The most
painful thing was the blisters in my mouth and throat that prevented me from
eating for a week. Luckily, I had a very mild case, and sustained no damage to
my eyes. I still have dark spots from where the blister were. I now know that I
cannot take anything with any type of sulfa drug.
Name :: Karola
Email_address :: alarm@jippii.fi
Story :: Hello everybody!
Im sorry I dont have english very well, but i must tell I have too SJS and EM
syndr. All inside and skin. Mouth is bad usually. I take Geavir every morning
and evening. Cortison is good when im very sick.
I have never seen anybody else have this sdr. 2milj. people here in Finland,
manytimes was in skinhospital (=y know sorry:))
My doctor say have seen 2 patient before.
I have eat yonger much Metronidiazol..
Verymuch good living for everybody and moust SJS people
Karola 44y. Helsinki Finland
Name :: Marie Leavy
Story :: My daughter was three and a half when i took her to the family doctors
with a sore throat.After telling him she was allergic to penecillin he
prescribed amoxacillin as he said she had a throat infection.I gave her the
medication for 1 day.The following morning she had little sores appear on her
tongue.Itook her back to the doctors where he prescribed Nystatin drops for her
tongue.By now it was 2 days since she had eaten.On the third morning she was
delirious and drifting in and out of sleep as she spent the day screaming and
crying in pain.That night as she lay on my bed she was like the possessed little
girl in exorcist.At 8am i took her to the hospital as we waited i got her to
drink 2mm of water she hadnt eaten or drank for four days.The doctors said it
was just an infection and sent us home.An hour and half later they telephoned me
to ask me to take her back as they thought it may be more serious.I took her
back.When we reached the hospital she was put in isolation and hooked up to
drips in both arms.She was visited by doctors twice daily and nurses every
hoyr.After being in hospital for one week we were allowed home,she was still
poorly but thankfully better.We were told she would suffer with stevens johnson
syndrome for the rest of her life but thank God so far we have been extremley
lucky.She is six and a half now and you would never know what she went through.
Name :: buzoianu Vlad Cosmin
Email_address :: dudu_bestialu@k.ro
Story :: My name is Buzoianu Vlad Cosmin, I'm from
Roumania, I'm 28 years old and when I was 3 and half years old, the doctors
discovered that I suffered from SJS. I happened to catch a simple cold for which
the doctors administrated a 24 hour treatment with Biseptol and penicilina. Then
I had fever and thus they administrated a maximum dose with antibiotics:
Penicilina, Canamicin,Biseptol.They wrongly diagnosed me with septicemia.
Eventually, the diagnosis was SJS in a very sever aspect, which could endanger
my life. I had bladdersand bubblel on the teguments and the mucous membranes,
serious bilateral ocular touching, septic condition. It came out that Iwas
allergic to Biseptol, Penicilin and Vibramicin.In order to save my life, the
doctors administrated corticoids and ant biotherapy with Gentamicine, rifamicine
and special ocular treatment. During the next years I was operated on for
correction. As a result, I had no lachrymal gland any more, I can't see with my
right eye, while the left one functions at a reduced scale.
In 1993... 1/25 NC=0,04, in 1994...1/16NC=0,06(1980 - scar Ethiopian - SJS
sequels, 1981 - scar Ethiopian - SJS sequels, 1982 - scar - Ethiopian ,
symblepharon - SJS sequels, 1983 - conjunctiva plastic operation , along with
phimosis surgery - circumcision, 1986 - symblepharon of the right eye - cornea
xerosis, total conjunctiva plastic operation with oral mucous membrane, 1988 -
totally vascular zed leukon right eye, cornea-conjunctiva xerosis, scare
Ethiopian, marginal leukon xeroisis left eye.
At present, genes are growing on the inside, which are scratching my cornea,
reducing eye acuity.
Doctors told me that, in time, I would lose my sight entirely.
If there is any chance for me, if technology has improved and can save me,
please answer me.
Thank you.
Name :: charlene bailey
Email_address :: baileycharlene@sbcglobal.net
Story :: Two years ago, I had strept throat and thought I would treat myself
since I'd had it before. I took my spouse's antibiotics and some aspirin. A
couple of days later I noticed redish spots on my feet. I didn't think too much
of it, until a few days later I noticed my legs had these spots also. Since
this was happening during the winter, the spots on my legs became irritated by
my pants and became blisters. I got scared when the spots started on my lower
abdomin. I realized they were heading up to my face. I went to a doctor. they
gave me steroids. It didn't work so I went to another doctor who gave me two
shots of benedril. that didn't work either, so I went to a third medical
facility, they put me in the hospital. (forgot to mention, my blood pressure is
normally low). Anyway, while I was in the hospital I didn't need any medicine,
since they didn't know what was wrong with me. After four days they released me
and sent me to a dermatologist, who prescribed more steroids.
I stopped going to see any of them and stopped taking the steroids. The scars
from the blisters are still on my legs but it had stopped spreading. My blood
pressure was elevated.
I was testing a nurse (HIV test) one day who looked at my legs and told me I hac
a steven johnson. I didn't know what she was talking about. I looked it up on
the internet. My symtoms were all there. Why was no one able to tell me this
when I was running around to all these doctors seeking answers. Since that time
I have taken vitamin C to help my immune system recover. My blood pressure is
back to low (I know how to deal with it low, but not high). The problem is that
whenever I get things like bumps, ringworms (I get them often, now, didn't use
to), sores, etc they are always more severe than usual and leave large scars.
I use tea tree oil to heal these things. Is there something that I can take to
help my body make a full recovery that I can get at a health food store.
Perhaps one of your readers might have some suggestions. Thanks.
Name :: lucinda kirkland
Email_address :: cinda3511@aol.com
Story :: In April of 2005 I was given an antiboitic in the intensive care unit.
When I was transferred to a regular floor the IV piggybacks continued. I
noticed a lesion in my soft palate and then on my legs. They were blister-like
in appearance. I immediatley called for the RN and told her this was not a good
sign and to remove the IV. She complied but the damage was done.
One day later my hands and bottoms of my feet were nothing but blisters. My
nostrils were bloody as was my mouth. It took months of recovery. Is not there
a way for Drs. to recognize sooner?
Name :: Joshua E.Holloway
Email_address :: kholloway509@comcast.net
Story :: The story begnan in october of this year. My husband had systems of pink
eye and a sinus infection. We went to our family doctor to get ot checked out.
They drew his blood to see if his blood count was ok. He also had a fever. They
gave hin roceprin and levoguin they are to antibiotics for pink eye and a sinus
infection. That was on a Monday by Tuesday there was a burgandy rash on his
body. I called the doctors office back and they said he was having an illergic
reaction to the medication but not to worry about it , but to call them back if
it got worse. By wednesday it had turned black, I called the doctors office back
and they told me to get him to the emergency room. We went to the emergency room
and Joshua was admited into the hospital. They did not know what was going on,
they gave him some benedryl and oxygen for the night and did a lot of tests,
just to come back in the morning to tell us that his kidneys were failling and
he was being transfered to Athens Regional. I called my husbands father the
night he was admitted to the hospital. He called back early in the morning to
find out what was wrong. My husbands father is a doctor,I told him everything
that was going on and he told me it sounded like it was something called sjs I
did not know what that was at the time,but started to learn about it as time
went on. My husbands father told them to start treating him for stevens when he
went to Athens
He stayed in Athens for 5 days they gave him alot of steriods and other
medicines to slow down the medicine that was causing the sjs after 5 days his
kidneys got worse and he need to get the skin removed from his face,legs,backand
groin area of his body. He also has sloughing of the lungs and internal
bleeding. His left eye suffered some loss and because of the inernal bleeding
his almost died. They thought they were going to have to operate again but god
healed him within 3 days of the bleeding starting. It still seemed lke the
londest and hardest time of our life. Joshua was in the hospital from oct 22 to
nov28. He is still on dialasis but we are believing that God will heal that to
and through the foundation we we be able to get a good eye doctor and regular
doctor. I am really glad my husband did not die. Yes he has a long way to go but
the support of our mothers, friends, family,and church, and last but not least
our God we are going to be just fine.
Sinserly, Karen Holloway
Name :: Kim Blass
Email_address :: avida36@yahoo.com
Story :: I developed SJS after being on the anti-convulsant lamictal for
approxamately two weeks. I became extremely fatigued and felt more ill than I
had ever felt before. I developed a rash within forty-eight hours of the onset
of my illness. I went to the doctor three days in a row in tears because of
the pain I was in and even became disoriented. The third time I went to the
doctor he gave me xanax and told me to calm down, and gave me anaprox for pain.
That night, according to my boyfriend, I was up crying in pain. In the early
morning, he drove me to the emergency room where I was promptly admitted to the
ICU and subsequently diagnosed with SJS. I am 42, slightly older than your
typical cases. I'd love to learn more about SJS and I'll be in any studies that
will help your cause.
Sincerely,
Kim Blass
Name :: Eve Dorgan
Story :: It is important to let people know that SJS not always is the reaction
to medication. This belief is what, I feel, caused the delay of a proper
diagnosis of my ten-year-old son Sean.
Sean woke up one morning with lips swollen to the size of and the color of large
sausages. He had battled a nagging cough for a week as we all had. We are a
family of six.
Sean's first visit to his pediatrician revealed strep and he was immediately
placed on an antibiotic. Unfortunately, Sean also had mono, pneumonia and
microplasma. His body was unable to figure out which illness to fight and in
its confusion it began to attack itself.
Sean wound up in the hospital battling this syndrome for seven horrific days.
He was on morphiene for the horrendous pain. Luckily, if you can say that when
speaking of SJS, Sean's battle remained in his mouth and throat. It was also on
his penis and slightly in his left eye. He had a skin rash that broke out all
over resembling third degree burns but, through the grace of God, they were gone
by morning.
Sean's face would swell three times its size and the inside of his mouth and
nose would fall out. He vomited blood constantly. This went on over and over
again, every three or so hours for seven days. His pillows would seep with
blood and puss. Horrifying.
When Sean was first admitted the doctors kept on asking me if he had certain
medications. Motrin... etc. Because he did not they hesitated with his
diagnosis. The fact that he had an outbreak before he started the antibiotics
perplexed them as well.
When the outbreaks finally "burn" themselves out the recovery is incredible!
The mouth heals fantastically and except for a small scar on his lower lip you
can't believe such a horrendous thing happened to him.
Pray for those poor people who suffer with this all over. Pray that their
doctors know that SJS CAN be caused by ones own body. Not only by medication.
Name :: Andrew
Story :: I am a very fortunate SJS survivor mainly due to this website and the
internet. In June of 2005 I was diagnosed with psoriatic arthritis. I knew of
these diseases separately but not together. After seeing several different
dermatologists and each one diagnosing something different, I decided to
research my symptoms on the internet. My research led me to a rheumatologist
who correctly diagnosed me.
He placed me on Sulfasalazine for the arthritis and Methotrexate for the
psoriasis. Which both began to clear up, for me the psoriasis was much worse
than the arthritis. After several months and an intial remission the psoriasis
and arthritis returned, so my doctor increased my medication.
I have been told in the past I had Rosacea on my face and now some psoriasis
too. When the rash started on my face it was difficult to diagnose. I was
placed on Prednisone to fight the rash. Two weeks after my sulfasalasine was
increased the rash on my face worsened. I had been out in the sun and just
assumed it was sunburn. My rheumatologist placed me on a higher dose of
prednisone and told me if I was not better in three days to call him back.
After three days there was some improvement so I did not call him back.
Five days later my face turned red and my ears turned red, I started getting
little bumps on my shoulders and genitals. I told my wife, who is an RN, that I
thought I might be getting chickenpox or something. She did not think that was
what it was. I was treating it with Aloe lotion and prednisone and it was not
going away.
Then I started getting these little blisters on my left ear and they started
spreading around my ear and after a couple of days behind my ear and down my
neck. They were just a little sore. I continued to go to work for a few days
before the blisters on my left ear became like they were on fire!
I was at work when the pain became unbearable, my skin started stretching and
cracking behind my ear and on the side of my neck. I had vaugely remembered
what my rheumatologist said could be one of the adverse reactions if the rash
worsened. I typed in Stevens Johnson Syndrome on an internet search engine,
which led me to this website.
All of the symptoms I found listed I had, except sores in my mouth. I called my
wife at work at our local hospital and told her to ask one of the doctors about
SJS. She said, "you don't have that". I told her to go ask him anyway that I
was going to have to return to the doctor asap. My wife knew how much I had
suffered the previous night. Pain pills brought the only sleep I had.
My wife called me back about twenty minutes later and said the doctor says for
you to get to the Emergency Room ASAP. I left work and was at the ER within ten
minutes. That doctor met me at the door and took one look at my left ear. He
told me I had SJS and he was admitting me to the hospital.
Within thirty minutes I was in a private room with an IV pumping IVIG into me
along with high dose steroids. Two hours later they moved me into the Intensive
Care Unit. Fortunately for me the doctor whom my wife asked knew all too well
about SJS. He was the doctor who correctly diagnosed their last SJS patient,
who died three days after being transfered to the burn unit.
I spent five days in ICU and an additional day in a private room after leaving
ICU. After three days of round the clock IVIG fluids the burns were reversing
the blisters were going away. The rash was going away and the intense pain was
slowly going away. The doctors decided to keep me and continue treatment to
prevent the SJS from returning. It was determined the Sulfa drug was the cause
of my SJS.
Fortunately for me it was caught early, diagnosed correctly, and treated
promptly by a dcotor who knew what to do. I have some occular change to my left
eye but it does not appear to be causing me any problems other than some
dryness.
I do not remember much while I was in ICU except intense headaches and back
pain. It is my doctor's opinion and mine that early IVIG treatment saved me
from a much worse fate.
Name :: Graeme Romer
Story :: I am 26 years old, live in Dublin and am in the process of recovering
from SJS. In October last year and went off on holiday to Spain where i fell
unwell, with what i thought was a dose of the flu. I attended a doctor in Spain
who prescribed me with some antibiotics and a couple of other standard
prescriptions. I started to take these as the prescription said, and over the
course of my weeks holiday i started to feel worse, was unable to go out in the
sun, and the thought of food made me physically sick, i was still taking my
prescription when i arrived back in Dublin a week later, once at home i called a
doctor out to my home, and changed my prescription to a stronger antibiotic,
and said told me that if i was not feeling better in 48 hours to get myself to
the hospital. That was Saturday afternoon, Sunday was spent in bed and then on
Monday morning everything started to go wrong, i awoke very early and my mouth
was full of blood blisters, i got dressed and made my way to the A&E Department
of my local hospital (Tallaght Hospital) serving west Dublin. Upon arriving
there i had the usual 5 hour wait, and i that time i was told that i had severe
Pneumonia, unfortunately over the course of the next few hours my eyes had gone
red completely and i developed an horrific urinary infection. It was late
evening at this stage and i was in horrible pain. Over the next 48hours my whole
body blistered in side and out, and including genitalia, this resulted in
constant bleeding inside and out, the worst area effected being my eyes, it was
impossible to sleep.
Over this time period the doctors were not sure what was going on, they new i
had pneumonia, but my symptoms were now changing, i was then wrongly diagnosed
with Chicken Pocks as well, i had all kinds of other reactions and was getting
progressively worse, including losing my voice and having to go on oxygen.
Finally a Doctor who had come across SJS before saw me and immediately changed
the way in which i was being treated. I now know that i am never to take
penicillin again.
All in all, i had the scariest 4 weeks of my life in hospital, lost 2.5 stone in
weight, was lucky to keep my eye sight and pretty much had to learn to walk
again.
I am back at work now, but like a lot of people sometimes feel like i have no
energy and am a bit low of self esteem etc due to scars etc that i have been
left with.
Name :: louise
Email_address :: pp.oldershaw1@ntlworld.com
Story :: my daughter who has severe learning disabilities developed sjs while in
hospital. none of the doctors new anything about the condition, which as a
parent you can imagine the trauma i was going through. apparently, it was caused
by phenatoin, but 10 months later she has recieved an appointment for patch
testing to establish the cause, i have never in all the longstay in hospital
recieved any information whatsoever from the medical proffessionals, i had to
seek the info on the internet for myself, which was a shocking discovery, i
didnt know whether she would survive such horrific ilness. 10 months on and she
is not the same energetic happy young girl that she s always been, she is
lethargic most days and suffers bad headaches-migrain, she has lesions on tongue
an probably in throat an tubes which makes it difficult for her to eat, she also
has sleepless nights and what ever else as a result of sjs i would nt know as
she cannot communicate.
we live in manchester England and would like to hear from anyone who has
suffered from sjs, ive read it can re occure and im very concerned
Name :: Wanda Seldon
Story :: My 6 year old son Graham has recently been put on medication for ADHD.
Being a concerned parent I opted for the best medication money could buy. I had
a very strange "preminision" before we began medicating him. We began last
Wednesday. His reports from school were magnificient! He had finally found
happiness and acceptance within both worlds! On Saturday I decided not to
medicate him for the day ( giving him a vacation from the drug) That afternoon
he erupted in large hives, which in seconds became Large papular "welts" larger
than my hand. To outpatients we went with 2 tspn of Benedryl in him. Within the
15 minute drive, his skin was unbelieveable! The doctor on call discontinued
the "Concerta" that he was on for ADHD and told me to continue with Benedryl.
Yeah it stopped the itching but 2 days later it was back to outpatients (
monday). Our family doctor who I idolize, said he had erythemia multiforma. I
sat up for 3 nights with my son and watched as the welts came and went
simultaneously. I was exhausted. Still waiting on seening the pediatrition on
Thursday to verify if the Concerta may have been the cause. In the meantime
today, monday as I was getting his prescription filled for Atarax, I noticed a
neighbor at the antihistimine counter. I inquired. Her daughter who is in a
different school has the exact same thing. Could it be a "virus". From what I
have read it is not contagious? It has been an awful experience to watch your
child go through and it seems to be far from over.
Name :: Robert Clark
Email_address :: Bluemill7@aol.com
Story :: March. 8, 2001, my husband Robert Clark had knee surgery. When he came
out of surgery I could not wake him for hours latter, I knew something was
wrong. When I asked the nurse she told me this happens sometimes to patients.
When he finally awoke I took him home, he told me he had sever pain in his
throat and it burned when he took a breath. Robert also told the nurses before
we left the hospital and again the said this was normal from the tub they use
during surgery. A few days went by and Robert started developing blisters in his
moth and on his lips working it way out onto his face. We thought it was cold
sores from the stress of the surgery. Another day went by and he was discharging
puce out if his nose and eyes. At this point I insisted on rushing him to the
hospital because it was poring out of him, he could not speak at this point, the
blisters were so bad in his mouth. When we arrived to the hospital they could
not figure out what was wrong with him. The performed all kids of blood work and
decided to admit him because his organ functions were not normal. Two days have
gone by and the Doctors still did not know what the problem was, all we knew at
this time was each day he was getting worst and worst his body now was covered
with what they called target lesions (blisters). The Doctors were giving him
heavy doses antibiotics that were only making him worst. What we did know at
this point was his organs were shutting down, his spleen was enlarged, his
organs were burning as if he was in a fire blistering, and it was not looking
well for him. Finally the third day a doctor came in and told us that Robert has
the Steven Johnson Syndrome, the hospital stopped the antibiotics immediately as
it was making him worst. I was relived to here that we finally had an answer. I
did not know what this horrible condition was, I asked the doctor, “now that we
know, we can give him the medicine he needs and he will be ok?” I will never
forget what the doctor said to me that day,” Mrs. Clark, pray for your husband,
pray for the best for he is a very sick man and there is no cure for Steven
Johnson Syndrome.” My heart stopped, I did not know what to do, what to say .How
do I tell our small children that their Daddy could die. The Doctor explained,
Steven Johnson Syndrome is from an adverse drug reaction and the affecting drug
for my husband was the Anesthesia given in his knee surgery. Now we know this
is the reason why his throat burned him when he woke up. When Robert could talk
again he told the doctors that when they told him too breath in the agent he
felt it burning him rite away but could not stop them because it was putting him
to sleep. The only treatment for Robert at this time was a lot of liquid IV and
they tried heavy doses of Steroids .This treatment worked for Robert but not
without leaving him with life long effects. Robert now suffers from dry eye
syndrome,because his organs burned and blistered he has drug induced
Hemochromatosis. This condition now limits Robert’s diet he cannot eat anything
with iron as his body cannot process iron . He also cannot have any alcohols do
to his liver damage. Robert has a rare case of Chronic Steven Johnson syndrome
,were he still has out breaks. He keeps a bottle of steroids with him at all
times as someone who is allergic to bees would keep and epipen. As you can see
it is very important that there becomes a better awareness of the condition. If
the Doctor knew what they were dealing with the first day with Robert some of
his long term problems could have been avoided.
Thank you for this website it has helped us so much over the years,
Tina Clark
Name :: Sarah Tarrant
Email_address :: sarahtarrant@btinternet.com
Story :: Mum and Dad’s History of my SJS
Aged 4 in 1962 –
previously healthy except for having radium on finger (for spreading “strawberry
naevus)
Had usual DTP & polio vaccinations
Didn’t have smallpox vaccination until January 1962 as Family History of severe
reactions to it in maternal grandma and 4 maternal Uncles (mum didn’t have it)
Had scratch smallpox vaccination – had very bad arm, never “well” again
(Brother was irritable as with teething, and had swollen arm, but resolved
quickly)
Then in June 1962 aged 4 1/4 (Dad was haymaking) I became very unwell
Falling asleep over meals }
Listless } for a couple of weeks
Febrile }
Then became even worse -
Delirious
Red skin like scarlet fever all over – crimson all over, no gaps
Lips went red and Blistered – peeled
Strawberry tongue – very sore and blisters in mouth – peeled
Haematuria
Pink sclera
Couldn’t bear to be touched – hurt all over – including joints – couldn’t walk
Sore bottom
No Diarrhoea or Vomiting
Dr came at 12.30pm, dad told him thought I had scarlet fever - Dr thought
encephalitis sought and fetched Dr Clare - Paediatrician at Gulson Rd Hospital
in Coventry
– brought him back to cottage by 2pm
Arranged my admission as emergency – I was in by 3pm and was photophobic at that
time
ON Admission
told very ill
Nurses said I should be in Isolation Hospital, not general ward
Mum & Dad told 2-3 cases/year in Coventry – not very much known about it
Mum sat up all night to make “Mrs Bear” soft toy
Treated with Cortisone
1 week after admission – peeled from fingertips – all over
Discharged after 10 days - told to take her home and make a fuss of her
But told might well relapse in next few days
Told to keep me out of sunshine for 2 years
Taken to Skegness for “Air” and convalescence
Finger and toe Nails cracked across and came off after few weeks
Over the next 2 years, some days went “flop” and pale and lost appetite for few
days
Not fully well again until about aged 11
Aged 5 first Asthma attack
Since then I have remained quite well, with 2 grown up sons, and flourishing
career as a nurse.
The only legacy, as far as I can tell is that I don’t sweat in heat (even in
Sauna), but “radiate” heat, and yet feel cold; and have low FEV1/FVC ratio
(diagnostic of COPD), despite massive lung volumes and thus good FEV1 figures.
Now 47 years old!
I do wonder, though, whether this was Kawasaki Disease before the disease was
named officially???
Any Comments?
Sarah Tarrant
Name :: shyla a. ward
Email_address :: shyla_ward@yahoo.com
Story :: I had sjs 2 years ago. right now Im 12. it was very scary.
Name :: Lyndsay
Story :: I was two and half when I first became ill I had measles and was
epilptic at the same time I was put on combination drugs to deal with both these
things and from this I developed stevens johnson syndrome I should say that I
was born in Ireland in 1981 so as you can see it was a fair bit back again when
my mother noticed that something was wrong was a trip to the beach I was wearing
a yellow and purple polka dot dress and after about and hour of being at the
beach my skin matched the dress when she took me to the hospital first they told
her not to worry so much and sent me home overnight it got worse and she brought
me back to the hosptal they saw something was wrong and then had the cheek to
ask her why she hadn't brought me in straight away.
I my skin was for want of a better word in bits my eyes were sealed up and every
opening of my body was infected my mother said that I looked like something from
a horror film I became somewhat of a medical novelty at the time as the docters
were forever examining me to show there students exactly waht was going on
unfortunatly it got so bad at one point my mother was asked if she would
consider signing a form for them to place a tube in my srtomach as they were
unsure as to whether I would be able to eat properly after this.
Thankfully it was not needed I was fine the worst scaring on my body was
actually in my mouth the rest of the scaring save for that has dissappered as I
have grown older.
I was left with a mildly weakened immune system genraly meaning if someone has a
cold and i'm in contact with them you can be sure I'll get the flu. I have also
been left with photo sentive eyes but other than that I have perfect vision with
no need for glasses or the like.
I realise that I have been very lucky because save for the things I have
mentioned I have had no long term side effects from this and I am not even
epiliptic anymore having had my last fit when I was seven.
I suppose I am writing this because I'd like people to know that ther is hope
that you'll be fine as my mother would say small hope is better than no hope at
all.
thank you for reading this.
Name :: Wendy A Tarnowski
Email_address :: wpooh@lycos.com
Story :: My 14 month old son was recently in the hospital with SJS. He had a
severe reaction to Amoxicillin. Luckily he is here with us today!
Name :: ranja rooney
Email_address :: ranjarooney@hotmail.com
Story :: I am a 29 yr old female lives in the USA since 2000 and would like to
share my SJS story that I just went through this past week. I would like to help
make people more aware of this desease. Not one person knew what this was that I
had not even the Doctors and it scared me to death. I got treated the 2nd day
after my reaction, thanks to my friend she rushed me to the walk in clinic, than
they rushed me to the ER. I had all the symptoms of the syndrom from red puffy
eyes, swollen and chapped lips, rash and blisters in my mouth. It was very
painfull and it scared me and my family to death. Thanks to all the support and
prayers and the little help that the Docs could do I got to feeling a little
better. I haven't been to work yet, but I hope I get to work this week.
I didn't think I was gonna make it. Please spread the word and let more peopel
know about this. If you have any suggestion or need help contact me.
Sincerely,
Ranja
Name :: Samuel L. Thompson
Email_address :: jensamoty34@yahoo.com
Story :: WHEN I WENT INTO THE MILITARY, I BEGAN TO HAVE MANY PROBLEMS WITH MY
EYES / SEVERE HEADACHES. SUBSEQUENTLY, IWAS HOSPITALIZED TO UNDERGO VARIOUS TEST
TO FIND OUT WHAT WAS GOING ON. ALTHOUGH EXSTENSIVE TESTING WAS DONE IT WAS ALL
TO NO AVAIL. I FINALLY COMPLETED MY BASIC TRAINING AFTER BEING RECYCLED. I WENT
ABOUT MY MILITARY TOUR HAVING TO ENDURE A TREMENDOUS AMONT OF PAIN.
I DECIDED THAT I COULD NOT GET OUT OF THE MILITARY AND BE A BURDEN TO MY FAMILY,
ESPECIALLY MY MOTHER. IT WAS THEN I DECIDED TO EXTEND MY MILITARY STAY WHICH
TURNED INTO EIGHT AND A HALF YEARS. IT WAS EXTREMELY HARD BUT THROUGH IT ALL I
MANAGED.
