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Name:: Doreen Higgins
Story:: Stevens Johnson Syndrome My Daughter Paula
Richardson age 38 was struck down with SJS in July last year 2001. She was
firstly diagnosed with Chicken Pox, and then after l week it was confirmed as
SJS. She spent a week in intensive care when we nearly lost her, she had
pheunmonia, scepticemia, and was covered from head to toe in sores - both
externally and internally. Nearly one year on her skin has fully recovered, but
it has left her with problems with eating and her eyesight is an ongoing
problem. If there is anyone out there who would like to contact me I would be
very pleased to hear from you. DOREEN
Name:: Debbie Ross
Story:: Hi my name is debbie ross and i first came
across SJS when my daughter was 11 yrs old. She came home oneday with a bad
cough. I took her to the doctors and they put her on penicillon. Her symptons
became worse and she started to get blisters on her hands and feet. Her lip was
swollen and tongue was sore. She got to the point where she could not walk or
hold a spoon to feed herself.i took her to the doctor and he said it was foot
and mouth desease. I continued to give her the antibiotics and she kept getting
worse. I then took her to emergency and she saw a peditrician. They diagnosed
her as having Steven johnson syndrome. They put her in isolation as they were
worried her sores would get infected and she stayed in the hospital for a week
in a half. She lost 10 pounds as she could not eat anything. Her mouth and
tongue were so sore and she still could not walk or hold a spoon to feed
herself. Her tongue started peeling. She finally got better and came home.
Then when she was 14 years old we came across it again. She was sick with
the flu and she has som cough medicine. She got over the flu, but her lips
started to swell up and her tongue started to get sore and the skin started to
come off her tongue. I took her to the doctors and he said it was a milder form
of stevens johnson syndrome. But this time we are not sure what caused it. It
could of been the cold medicine but not 100% sure. Not like last time we knew
it was the penicillon. This is was my story and i starting to do some research
on it. Thanks for letting me share this story with you. Debbie
Name:: Beverly McCarthy
Story:: I am a 55 year old LPN who got SJS from
taking Tegretol. It is an anti-convulsant drug but when given to people with
chronic pain, it is a sleep aid. I started taking it in January and got sick on
Valentine's Day with the "flu". Within 2 days I had a full body
purple rash and mouth swelling. My physician diagnosed it as a Sulfa reaction
because I took 2 doses of Bactrim for a sinus infection after the flu. Although
my reaction was severe, I was told I would be better in 3-5 days. Well, after 5
weeks of trips to the ER and 4 days in the hospital for dehydration, I was
finally admitted to a second hospital where I was diagnosed with a mild case of
SJS. By then I had lost 25 pounds because I couldn't tolerate anything in my
mouth. I tried Pedialyte and Ensure and anything we could think of to get some
nurishment into me. My skin was sloughing off and I felt like I was on fire. As
soon as the Tegretol was stopped, I started to improve but the damage was slow
to heal. Luckily for me I didn't have any skin lesions and my mouth has
improved tremendously. I am very sensitive to many foods and liquids which
cause mucous membrane sores. I was on 2 inhalers for Reactive Airway Disease
caused but that has also improved. My problems now are in the lower GI tract
with rectal bleeding, my private parts are still very tender and require
frequent medication. I also have dry eye. I use a gel in my eyes at night and
drops continuously during the day which controls the scratchy feeling. I am
seeing my eye specialist every 2 months and so far no ulcers.
I feel very fortunate to have had such a minor case of SJS. When I read the
stories of those who suffer from much worse symptoms, I weep for them. I pray
that the medical community becomes aware of the need for research into SJS so
that someday it will be just a memory and no new cases.
Name:: Amanda Blake
Story:: Early in the year of 2002 my 20 year old
sister Emily became ill. We took her to the doctor and they told us it was just
a sinus infection and when the medication they had given us wasn't working we
decided to take her to Strong Memorial Hospital in Rochester, NY. They told us
that Emily had a rare lesion in her head that bled every once in awhile. It
wasn't a life or death thing but if she were to get pregnant it could've caused
complications. The doctors performed the operation and got the lesion out. What
the doctors failed to mention before the operation was that there was a 2%-5%
chance that temporary loss of movement and speech could occur. Emily was this
rarity and she spent 4 weeks after the operation in the hospital recovering.
One thing that had really worried her before the operation was having her head
shaved but the doctors found a way to not have to shave her whole head, just a
little strip of it so Emily was happy about that. The hospital decided that
since Emily had been making such a nice recovery in the hospital, it would be
fine for her to come home and finish her recovery here. They also sent some
medication home with her, one of which was Dilantin, and anti-seizure
medication. Within 2 days of being home, Emily had developed a severe rash over
her entire body. Her lips had swollen and she had blisters covering her fingers
and toes. This worried us so we took her back up to the hospital. Within hours
the staff at Strong Memorial knew what was wrong with Emily, she had SJS. Over
the next 7 days the illness got progressively worse. She had a blister just
above her elbow that was 4" by 2" and it literally hung off of her
arm. She was put on morphine but that didn't do the job so they put her on
fenalin. The pain was very severe and in the morning when we would get to the
hospital she would be crying, at night when we had to leave, she would be
crying. They had to put her into the intensive care unit, burn trauma, because
if one of the blisters broke and got infected, it could kill her. She stayed in
the intensive care unit for 2 weeks and then was able to come home again
finally. Oh and i forgot to mention, they had to shave her head in order to
buffer some of the blisters off her head. 3 days after she got home she started
feeling a pain in her side so we took her back up to the hospital and she now
has blood clots in her arms, legs, and lungs. She has now been in the hospital
since May 16 and it is July 7, with the exception of those 5 days. Hopefully
she will be better soon. I just want my sister back. Pray for my sister and my
family as I will be praying for all of you. God Bless....
Name:: Debby Herbert
Story:: This story is mainly about my father, who
died of an allergic reaction to a commonly prescribed drug called Lopressor. He
took it for only one month for marginally high blood pressure. In that one
month the drug destroyed the capacity of his bone marrow to produce red blood
cells and platelets. He had to have transfusions every three weeks for the rest
of his life for these critical blood components. The name of this condition is
called Aplastic Anemia, most cases are from drug reactions. I have had several
severe drug reactions myself. The worst was to a drug named Donnatal. If I had
not gotten to an E.R. quickly I would have died because the reaction caused an
electrolyte problem affecting the heart. Plus due to the bella donna in the
drug, I suffered from hallucination for about a week which was absolutely
terrifying...in fact my F.P. said it was no different than a bad trip on LSD. I
have read an excellent book documenting current statistics on the
mortality/morbidity rates from prescription drug reactions...it is,
"Prescription For Disaster"...which you may allready know about.
I have been postponing a need elective surgery due to my fear of a drug
reaction to the general anesthesia and I am looking for info in regards to
this. Thankyou. Debby H.
Name:: Mary Ann Mathis RNC
Story:: I am a registered nurse in the largest
rural hospital in Mississippi. For the first time in my nursing career, I have
had the opportunity to take care of renal patient with Stevens Johnson Syndrome
over the past few weeks. When I first received the information as to what was
going on with this pt, I could find no-one who had ever seen it or heard of it
except for the doctor who diagnosed the disease. None of my collegues new how
to answer any of my questions, except for the fact it was caused by the many
medications she had been on. Being the why child, I got on the internet and
found Julie's Story and it has enlightened me on this disease. I love my job
and one of the strong points is that if you will let it, it is a job that will
teach you every day. Thank you so much for the information, and I might be like
the nurse in her story one day and catch something that might be missed.
Doctors are only human and most of the ones I have the pleasure to work with,
welcome any insight we nurses may have especially about a difficult case.
Thanks again for the time and effort into the information this foundation
produces to keep us ever informed. Sincerely, Mary Ann Mathis RNC
Name:: Tracy Jeffers
Story:: I think I was 2years old when I was first
diagnosed with SJS. The only reason I know I had this affliction is because my
parents have told me tidbits of it throughout my life. Reading about the
horrible pains some of the people have suffered through endlessly makes me glad
I don't remember it. My prayers are with everyone who has been affected by this
disease. I couldn't imagine the trauma that actually comes with recollecting
what it was like; all i have now is the fear of what's to become of me. The
doctors were treating me for some kind of sickness, I don't think I was ever
told what the initial treatment was for. They had given me a sulfa drug called
Septra to try and thwart the sickness. My SJS was caused by the allergic
reaction to Septra.
All my parents ever told me concerning the blistering was that it was
internal and external and that they could see no peach on my body. They told me
once that when my father was holding me, the skin of my lips tore right off on
his shirt. They told me I had trouble breathing and my mouth was dried and
sore. I don't know when I was first hospitalized for SJS, but it was on Good
Friday that the doctors told my parents that I wouldn't live to see easter.
Everyone prayed and prayed for me. My parents even had their church pastor come
in and pray over me in the hospital. My mother told once that she told the
doctors she wouldn't leave me at the hospital alone; she stayed with me the
whole time I was there despite watching her little baby go through what I dont
remember being so terrible.
I don't know exactly how long I was there but I do know that the days after
Good Friday were torture for my family. They could do nothing but wait and pray
for me not to die. The night before Easter was the worst; my dad said my mother
stayed up all night crying. He stayed that night and sat up just watchin her
watching her baby slowy leave her. But Easter morning, I woke up wanting an
Easter egg. I don't know if SJS causes coma-type sleep or not, but for some
reason they always stress me waking up when they tell this story to me and my
siblings. It was unexplained, the doctors were completely stumped by this; I'd
woke up wanting an easter egg. The hospital kitchen boiled me a whole panfull.
And i'd eaten most of them.
My parents always thought it to be a true miracle that I was pretty much
diagnosed death on Good Friday and was better by Easter in coincision with the
whole biblical death of christ and resurrection. And after hearing the story
over and over; it never gets old hearing how blessed I was to come out of SJS
with no side effects yet. My parents told me the doctors expected side effects
to be along the lines of blindness, deafness, or sterility. Thus far I can see
and hear just fine, but I'm a 19 year old virgin, and I still live with this
fear in the back of my mind that I might not be able to have kids when I'm
ready to. I wish there were some way I could know for sure. I cry myself to
sleep at night sometimes just thinking about never being able to have kids and
not by my own choice; that the gift of bringing life into this world was taken
from me. I pray it isn't so but not many people recover from SJS with no long
term effects.
Name:: Lisa Kendig
Email_address :: cajuncutie1021@aol.com
Story:: My Experience with Stevens-Johnson syndrome
In early January 2002, I thought I was getting pink eye. Soon my face started
swelling and getting red splotches all over it. It felt like my face was on
fire! I had to keep my head, ears and face covered with ice or it was
unbearable pain. It was like my skin was burning and stretching. After being
sent away from 2 emergency rooms on January 6, 2002, the third hospital
admitted me. By then, blisters had started forming on my lips and in my mouth.
Before a diagnosis was made (3 days later), I had blisters on my face, lips,
neck, arms, back and chest. Stevens-Johnson syndrome was the diagnosis. I had
never heard of this disease and knew absolutely nothing about it. It seems that
I had an allergic reaction to the drug Carbamazapine (an anticonvulsant
prescribed for hernia related nerve pain). I had taken the drug for 2 weeks.
I stayed in the hospital for 9 days. I don’t remember most of it
because I was highly medicated on dilauded, morphine, steroids and several
anti-anxiety medicines. I’ll never forget the first night in the hospital.
I asked a good friend to stay with me because I didn’t want to be alone
not knowing what was happening to me. She couldn’t hide her reaction to my
appearance. I could see the look of disgust on her face for what was happening
to me. I’ll always remember the way she sat across the room looking at me
with love and helplessness.
Once home I quickly became introduced to my new body, especially my mouth!
My lips were severely blistered. Each night they would bleed and scab together.
I tried everything I could think of to prevent this from happening, with no
success. Every morning I had to literally tear them apart bit by bit crying and
screaming (through a sealed mouth). There was a cleaning routine that the
nurses had taught me in the hospital that needed to be completed. It was
extremely painful but necessary. I often thought of the children who
experienced this unbelievable torture. I can’t imagine the pain and
powerlessness their parents must feel. I also had sores in my mouth so my
eating was limited to liquids and very soft foods for a while. I was very lucky
to not have more extensive wounds and healed quickly. The nerves in my lips may
be permanently damaged due to the blistering but they are not badly scarred,
only numb. My fingernails indented, bubbled and weakened. Later the tips of
some of the nails broke off. I lost a lot of hair and it still remains thin. My
arms, chest, neck and back remain scarred. The fever and chills still remained
4 months after the initial outbreak.
THEN IT HAPPENED AGAIN!!! On April 23, 2002 I returned to the Emergency
Room with a red face and the same burning sensation as in January. Tests were
done and I was observed for 6 hours. One blister developed on the inside of my
lip (which still exists). It did not progress any further, so I was released
with a high dose of steroids. I went to my Primary Care Physician the following
day who gave me more steroids. The flu symptoms started and the burning
sensation (from the inside out) continued. I was already taking Percocet for
nerve pain that I think helped to keep my fever down. My scars became hot and
inflamed. My breathing became labored. My throat became sore and my esophagus
felt like it was blistering. I noticed my eyesight was slightly changing. I
visited the doctors who assisted in my follow-up care for my previous bout with
SJS (eye doctor and dermatologist). No one could definitely say, “yes, the
SJS is back” until my eye doctor said she saw blisters in my bottom
eyelids again. They were not to the severity as last time, but they were
definitely there.
I started consulting with a Nutritionist in May 2002. Since then I have
started taking many vitamins and supplements to help my immune system and body
fight the SJS. I have found no documented “natural” treatments for
SJS, so there is no precedent to follow. My body is very hypersensitive to
prescription drugs now so I am being very careful with what I take. I have
changed my eating habits to include only healthy foods (mainly vegetables). I
was told to avoid sugar (it will increase the heat). I eliminated caffeine
completely. I am also working closely with my acupuncturist who is adding
Chinese Medicine to my treatment.
August 2002. The internal heat and pain still persist. I believe the
blistering has moved up to the back of my throat. I am now taking Morphine and
Percocet. I’ve had 2 doctors try to prescribe anti-convulsants to me after
I told them I would NEVER take them again! I’ve had several additional
doctors throw up there hands and say, “I don’t know what else to do
for you.” I was shocked when the infectious disease/immunologist said this
to me last week! Now I am seeking the knowledge of doctors at Vanderbilt. I had
my 2nd Endoscopy that shows my esophagus seems to be healing. It also showed
that my stomach and intestines are red. Still, no one can explain the internal
heat I battle daily. I’ve gotten almost all of my hair cut off so I can
easily dunk it in water several times a day. I feel I may be someone’s
science experiment before this is over. I have been eating an enormous amount
of ice cream Talking increases the chest pain… hmmm that might be a clue
for a doctor.
Speaking of clues, my last visit to my “regular” doctor turned on
a light bulb in his head. I pointed to my mid chest and said “it hurts
here”. He seemed to know immediately what was wrong. My chest bone was
EXTREMELY sensitive to touch. He says it is Costochondritis. As your ribs
expand and contract when we breathe, move, talk…etc. the tips of the ribs
fit into joints or cartilage. These joints are inflamed. It takes a long time
to heal b/c you can’t stop breathing completely. This process could take
up to 8 months. I’ve already struggled with this pain for 5 months. The
back of my throat still feels raw and the chest pain is not getting any better.
He put me on steroids again! It’s the pack that starts at 60mg a day and
works down over 12 days. Please keep me in your thoughts and prayers. If you
know of anyone with a similar situation, please try to put us in touch with
each other. I would truly appreciate it!
There are many people praying for me throughout the country. I believe the
prayers are helping immensely. I know that everything happens for a reason and
I have faith that God’s will be done. I have decided to write a book on my
experiences with Stevens-Johnson syndrome. I would like to include other
personal stories. If you or someone you know has experienced SJS and would like
your/their story to be included, please contact me at
cajuncutie1021@aol.com
Name:: Vikki shores
Story:: I was about 14 years old and I woke up one
morning feeling like I was getting a cold my chest was heavy and I had a sore
throte. That evening I could only eat one bite of my dinner and I could not eat
any more I told my parents I did not feel good and went to bed the next day I
had a very high fever and had to stay home from school I was coughing up a lot
of flem, and coughed all day till my flem turned to blood the next day I had
blisters in my mouth they were all full of clear fluid, my father took me to
the dentist and he sent me home with advise to see a doctor. during that day
the blisters all popped and turned to blood blisters and i could not swollow.
we saw a dr. the next morning and he sent me home with antibiotics and cough
medicine. during this time I had not had one thing to eat or drink. the
following day when I woke I had hives all over my body and the blood vessels in
my eyes had popped and the whites were red and the blisters were gone in their
place were sores and my mouth was glued shut from the inside, I was taken to
the hospital and was in a blur for the next 7 days I had phonmia in both lungs
and was in the burn unit so my mouth could be treated every hour too keep it
open I had iv's and many doctors came to see me. I later found out that it took
3 days for them to find out it was sjs, they told me I was about the 10th
person in the US to have this syndrome. A priest came in to see me every day
for 4 days and read me my last rights. they never did find the cause for my out
brake. I was lucky to have lived and even luckier to not have much scarring i
have some problems in my mouth but that is about all of the long term effects i
had. I am glad that i found you and that i am not alone i can not believe that
there are so many of us and I never knew. I am 44 years young, and I have 2
teen age sons and a very productive life. during my ill days with sjs I was
living in washington state and for years after i gave them blood samples they
used for reasearch, I have moved a lot since then and do not have any contact
with U of W perhaps I should see if they want any of my blood after all of
these years. In 1986 I discovered a lump in my breast and had it removed to
find it was cancer and had the breast removed, I am cancer free to date, I dont
know if they are related I never even thought about it till just now. I don't
know who will read this and all of its spelling and grammer errors but feel
free to contact me if I can be of any help to you. vikki...
Name:: DONNA
Story:: MY HUSBAND HAS A MENTAL ILLNESS FOR WHICH
HE TAKES MEDICATION. ONE OF THESE MEDICINE IS TO HELP CONTROL SEIZURES. THREE
YEARS AGO HE NEEDED TO TAKE AN ANTIBIOTIC AND AFTER ABOUT THREE DAYS HE STARTED
TO BLISTER AND WAS RUNNING A FEVER. WE WENT TO THE EMERGENCY ROOM AND THE
MEDICAL STAFF TOLD US IT WAS JUST AN ALLERGIC REACTION TO THE ANTIBIOTIC AND TO
STOP TAKING IT AND THEY PUT HIM ON A STERIOD TREATMENT. THE FOLLOWING YEAR
DURING THE WINTER MY HUSBAND HAD A COLD, A SIMPLE COLD, HIS DOCTOR PRESCRIBED
BACTRIM FOR IT AND WITHIN TWO DAYS HE WAS BACK IN THE HOSPITAL. THIS TIME IT
WAS SERIOUS ENOUGH FOR HIM TO BE ADMITTED TO THE HOSPITAL. HE WAS DIAGNOSED
WITH SJS AND WE WERE TOLD THAT IT WAS CAUSED BY A REACTION WITH THE ANTIBIOTIC.
THIS PAST FEBRUARY MY HUSBAND AGAIN HAD A COLD, HE DRANK ABOUT 2oz. OF COUGH
SYRUP AND WITHIN A 12 HOUR PERIOD HE WAS IN THE EMERGENCY ROOM. HE SPENT 2
MONTHS IN THE BURN UNIT AND NEARLY DIED TWICE FROM COMPLICATIONS. AT THIS POINT
HIS BODY CAN NEVER ACCEPT ANTIBIOTICS AND WE DON'T KNOW IF HE EVER WILL. TO
DATE WE ARE STILL TRYING TO FIGURE OUT WHAT TO DO IF HE EVER GETS ILL AGAIN AND
NEEDS AN ANTIBIOTIC. THERE IS NO SPECIFIC TEST TO DETERMINE WHAT WILL REACT
WITH HIS BODY. IF ANYONE HAS ANY INFORMATION ON WHAT WE MAY TRY PLEASE CONTACT
ME AT MY E-MAIL ADDRESS. THANK YOU FOR LISTENING.
Name:: chami maya
Story:: i was prescribed proxen 500 for my
period,15 minutes after taken the pill,i felt like needles inside the vagina,it
was so strog that it would almost made me jump.then around my mouth(left hand
side) felt warm...next day my genital skin started getting very red and
blistering as well as around my mouth...nest days the skin was off ...i could
not go to the wc...could not open my mouth.. it went on and on like this during
5 month...no doctor could tell what it was..the one that prescribed proxen just
said its herpes... i went to paris,did tests and no it was not herpes.. till i
one day decided to stop proxen for my period and it stopped.. till now,i cry
when i remember... the last time i took that pill,i had blood coming out of my
nose and felt so much pain in my chest... now after 7 years i was just by
mistake telling a doctor about my allergy to proxen,explained to him the
symptoms so he mentionned sjs... i saw around 10 doctors and none of them ever
mentionned that it could be sjs.. and of course i was not treated...cuz no one
knew what it was
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