Name :: amy eller
Email_address :: amy_eller_1983@yahoo.com
Story :: hi there my name is amy eller and my son james pierre gregoire which is
5 years old is hospitalized at sini in baltimore maryland for sjs. this has been
a devastating experiment for him and the family . you would never imagen
something like this happing to you r baby. as they say yes it is a rare
situation. well it started out like flu like symptoms then his eyes started
burning and his throat as well so i brung him to the hospital in bel air
maryland (upper cheasapeak) which actually thats where he was born at. they
wasnt really sure of what was going on with james so in the mean while blisters
started appearing all over james body and he was crying out in pain at that
point i was loosing my mind my baby was on fire an didnt no why??? so they
transported him to sini and they new exactly what was going on and started to
treat him right away. they placed him in the icu unit and started to treat him
like a burnt patient. they sadated him with heavy narcotics for the pain and
speacial creams for his eyes and body area. it was horrible to see his body
changing right before my eyes i felt like dying.... well now after 3 weeks of
being there hes improving welly the doctors here came up with a new solution for
the eyes to prevent blindness and my son is the first they tried on which they
take the placenta from the after birth of a pregnent woman an coat his eyes with
it and belive one thing its working at this point i dropped to my knees and
thanked god for this blesssing all his blisters have turned to scabs an are also
healing i just want to say thank you to sini hospitals and to all his doctors
and the loving nurses that have been there for my son since day one i dont know
what we would of done with out you i want to send a speacial thanks to my father
for being there and his support
Name :: Fredrick J Callaghan
Email_address :: nerssilverlining@sbcglobal.net
Story :: I contracted sjs at 5 yrs of age. I was treated at Tripler's Army
Hospital in Hawaii. I just wanted to say thanks to the Md's and their support
staff for their help, as the mortality rate was extreme in 1967. I am alive
today by God's will and the men and women who treated me. My prayers go out to
those who have sjs and their families. FC
As a footer, while I was at the hospital there were many young men in the rooms
that lined the halls from the over sea conflict that was going on at that time.
Most memerable was the flailing and sceaming of a young man who had no limbs
that I saw as I was being wheeled down the hall for a spinal tap. This is the
last thing I remembered, I woke up a month later to my mother attempting to feed
me tomato soup(to this day I can't stand tomato soup). I have added this
because there are still men and women injured by the current conflict that also
need our prayers.
Also thank you to the men on my dad's Coast Guard ship for their gifts,
especially the Lite Brite set.
Name :: Julie Dinkins-Borkowski
Email_address :: julieborkowski@yahoo.com
Story :: I had steven johnson's syndrome when I was a child. Basically it is a
serious, sometimes fatal allergic reaction, they told my parents it was asprin,
but I think it can be anything.
I was a premie born at 4lbs in 1967. I got SJS when I was three. I got a high
fever and the doctors kept telling my mom to give me asprin for the fever. I
became comatose when my parents took me to the ER. I was immediately admited
and they had no idea what was wrong. I had blisters/hives on all my internal
organs and mucus membranes, my lips looked burned my eyes crusted over and I
could not open them. It hurt so bad to go to the bathroom that I would hold it
and scream when I had to go. I remember everything.
They gave me massive doses of steriods and called it SJS. None of the nurses
knew what it was and put me in strict isolation. When they changed my sheets
and bandages they would put them outside the door and NObody would touch them.
I survived and the doctors were shocked. I did have to learn to walk again and
I still have scars from the blisters not really noticable to anyone but me. My
mom said my whole personality changed. I became very serious and adult like at
four yrs old!
I now have one healthy son who is four and a daughter who is two, born with
Down's syndrome and Cystic Fibrosis.
Name :: Melissa
Story :: My name is Melissa. I got SJS when I was 16. Over my schools Christmas
break I spent it in the hospital fighting SJS. I was life flighted ti Schottish
Rite Children's Hospital of Atlanta. I spent 2 1/2 weeks in a coma and now at
the age of 19 I am still fighting with the complications SJS leaves you with...
I want to educate people about this. This doesn't need to happen to anyone else.
Name :: Cynthia Gatto
Email_address :: cynthiagatto3@hotmail.com
Story :: Em setembro de 2005, estava fazendo uso do medicamento ALUPORINOL quando
começei a ter febre e problemas oculares. Procurei um hospital e durante os
exames foi diagnosticado SSJ. fui internada e no decorrer das primeiras 48
horas, fui comunicada que na realidade eu tinha Necrólise Epidérmica Tóxica.
O processo da doença envolveu várias especialidades médicas, a medida que os
problemas apareciam. Toda a equipe de médicos composta por cardiologista,
pneumologista,oftalmologista,cirurgião plástico,clínico geral,
nutricionista,fisioterapeuta e nefrologista,conseguiram em 19 dias me retirar do
hospital. Quanto aos olhos e pele do corpo, demorei mais uns 4 meses para
receber alta médica. Hoje, tenho 52 anos, fiquei com o corpo cheio de
cicatrizes, alguns pequenos incômodos nos olhos e desenvolvi alérgia a quase
todos os medicamentos. Precisei fazer uma cirurgia de vesícula e o anestésico
ou os remédios tomados durante a cirurgia, fizeram reação alérgica.Não
conheço ninguem que tenha sobrevivido e também não sei como vou poder viver
sem medicamentos. Tenho trigliceres, colesterol, ácido úrico e hipertensão
arterial, fora dos padrões normais. Faço somente dieta alimentar mais isso
não adianta muito. Meus médicos não sabem como me tratar. Meu emocional está
muito abalado e hoje tenho medo até de um resfriado.
Name :: Kristie Schill
Email_address :: schill2@hotmail.com
Story :: This last December it has officially been a year since I was diagnosed
with SJS. I was 22 years old and taking a Sulfa drug for my acne. I was on the
drug for almost 2 weeks when I started having problems. My initial symptoms
were swelling, itchness and irritation of genital areas, eyes, and general body,
headache, fever, and lack of energy. I went into the emergency room the first
time on Saturday, Dec. 3rd at 4:00 pm. I was looked over by a nurse practioner.
I told the nurse of the medications I was on and how long I had been on them. I
was sent home and told to take tylonel, drink lots of fluids, and rest. I went
home, took tylonel and benadryl, drank some water, and went to sleep. This was
about 5 pm. I woke up about 7 pm and couldn't open my eyes. I was lucky in
that I was currently residing with my parents until I could find a house to
rent. My eyes were dried shut with mucus. My mom used warm water to open my
eyes. My eyes once open were red where it should have been white and every time
I closed my eyes they would cake shut with mucus. My face and upper body were
breaking out in a red rash. My lips and face were extremely swollen. My mouth
was full of blisters. I had extreme itchiness and irriation in the vaginal
areas.
My parents took me into the emergency room the next morning at 8:00 am. I was
met again by the same nurse practioner and my mom by-passed her to find a
doctor. I was treated right away with benadryl, steroids, and morphine for the
pain. I was placed in the hospital for the night. By Monday, things were still
getting worse so they transfered me by ambulance to Meritcare in Fargo, ND. On
Monday night I started having breathing problems so they placed me on oxygen. I
kept the room dark because my eyes were so sore and sensitive. For a while I
could not see very much and could mostly see everything in a blur. There is no
way to explain the pain. I had blisters in my mouth, upper body, face, and lips
that peeled completely. I spent a total of nine days in the hospital and was
not allowed to go back to work until Janurary 3rd, 2006. I am an agronomist and
work in an elevator. They were worried about infections that might have occured
because of the open wounds all over my body from the blisters and rash. I have
had many side effects due to the SJS. Where the rash blistered and peeled, I
have skin discoloration from the rest of my skin. I had some early problems
with my menstral cycle and also had ovarian cysts. I have had constant allergy
problems that I am still working on with doctors.
The worst part of the whole exprience is not knowing how bad it really was until
it was over. My family and the doctors kept that part from me to keep my
spirits up. My words don't even seem to do justice to the experience.
Name :: Rebecca
Email_address :: Lillian2natasha@sbcglobal.net
Story :: I was never diagnosed with sjs or ten but I think that that was what
happened to me. I was put on Depekote for possible bipolar. My doctor said that
I should try it cause "what harm could it do" so I started taking it. I was on
it a total of three days! That was enough time for all hell to break loose! I
had an extreme senitivty to light. My throught all the way down my whole
digestive tract was on fire! I could feel every bit of food going down my whole
throat! Becase of the possible bipolar and lack of knowlegde I was put in a
mental hospital!! I thought I was going to die and that no one cared. I prayed a
lot while in the mental hospital. It was weird My body started retaining water
and I got costipated. I prayed and I prayed then I swear I peed more in one
sitting than I have ever peed in my whole life. I read in someone else's story
about how they said everything felt new to them somehow afterwards. That was
sooo true for me too. That was hard to explain to people. Oh I forgot to mention
the rash, it did not get as bad as the photos I saw but I think it was because
my doctor when she heard I was really ill told me to stop taking it right away.
She told me she was confused because most people who are alergic to depekote
don't show signs till they have been on it for a couple of weeks and I got ill
on the first day! After I stopped the meds my legs started shaking and did not
stop for a whole week! That was painful. I thank God I am alive. Doctors told me
that I had such a bad reaction that if I ever take Depekote again I could die.
Thank you for this site to give knowlege to others and sorry for my bad
spelling.
Story :: My story is about my father who is now 64 years old. Last year he and
my mother had stopped by to visit with his mother. While at her home he took
Aleve for a headache. After a short time he began to hurt in his chest and told
my mother he wanted to go home. As my mother drove the 6 miles back to their
own home my father began to sweat profusely. He looked like he had been
standing in the pouring rain. My mother's floor board was full of water (his
sweat). He started to tell her he couldn't breath. My mother began to think
that he could be having a heart attack as his arms and legs where now going
numb. My mother tried to get him to let her turn the car around and take him to
the hospital but he refused. He just wanted to get home and lay down. When
they arrived 10 minutes later at their home sweat was now pouring off of him
like running water. He couldn't feel his arms or legs. My mother attempted to
help him into the house as my father struggled dragging one leg behind him.
After finally managing to get him into bed my mother began to remove his
drenched clothing. His legs and arms were now turning purple and he was
struggling to breath. My mother said everything was happening so fast and he
was hurting so bad that she was afraid to leave him even long enough to call for
help. She stripped his cloths and began to try and cool him down. She thought
he was dying.
After a period of time he began to gain some relief. The next few days he was
exhausted. He didn't even have enough energy to leave the house. We finally
begged him to see a doctor as we still thought he might have had a heart attack.
He saw a phsyican the following day. After describing the symptoms to the
phsyican the next question asked was "what did you take prior to the symptoms?"
After learning that he had taken Aleve the doctor described the exact same
symptoms to my parents that had occured with her own mother. Only her mother
was rushed by ambulance to the hospital after taking Aleve. Her mother actually
died on the way and had to be revived.
An EKG was ran to ensure that my father had not had a heart attack. He seems to
have recoved for the most part. It took a while for his strength to return and
he still tires easily. But we are very thankful and lucky that he is such a
strong man and that God was with him.
My mother called the number located on the back of the Aleve bottle and was told
to describe his symptoms. She was then told that these were allergic reactions
to the Aleve product in some cases. They then mailed my parents a $10 check
with a disclosure on the back.
We have since heard of similar problems with others in our area taking Aleve.
My father had taken the product several times before with no problem. So it was
odd that he became allergic to it immediately. It is actually the product in
Aleve that causes his reactions. He nows has to where a medical braclet at all
times to warn of his allergy and keeps benadryl in every vehicle they own.
Name :: Odyssey Bonaparte
Email_address :: obonaparte05@yahoo.com
Story :: My story begins with a simple bladder infection, I was being treated
with Bactrim. After several days on the medication I began noticing blisters on
my lips and my throat began to close I was unable to breathe. my famill rushed
me to the hospital where they told my family I had everything from a new form of
chicken pox to a sexually transmitted disease, only after I arrived at the
University of Michigan Burn Center in Ann Arbor was a biopsy done and I was
finally diagnosed. I spent several weeks in the burn center the doctors said
because I was afro american it would be hard for my pigmentation to return to
normal even with the treatment of silver nitrate. I could not breathe on my own
so a trech was put in it took me 3 weeks to begin breathing on my own again. I
also had very large blisters on the bottom of both my feet which kept me from
walking for 2 weeks, I began receiving therapy to try to swallow and walk on my
own. Its been almost 9 years since my terrible ordeal I have severs scarring on
the upper part of my body and my left eye waters like its connected to a faucet.
I am stillvery uneasy about letting people see my arms but now that I know there
are others like me it will help me to keep moving and not to feel sorry for
myself. I have a 4 year old son who has changed my outlook on life. Thank you
for this website it has changed my life, and now that I know that I am not alone
I can start spearing the word to my friends and family to begin making donations
to support sjs. I would love to volunteer for events if you ever come to
detroit,mi i would love to meet others like me.
Name :: Melissa Dixon
Email_address :: mdelmo02@yahoo.com
Story :: My name is Melissa Dixon and I am 22 years old and I have Steven Johnson
Syndrome. I was diagnosed in September 2005 with the chicken pox. Then, it got
worse. I had a black-out spell while I was in the bathroom. I fell. The next
thing I knew my boyfriend found me in the bathroom and he pick me up and put me
in bed. I started complaining about my wrist hurting due to the fall. I took
Aleve for the pain. A couple of days later, I felt ever worse. I couldn't keep
anything down when I ate. My boyfriend and his mother took me to the Emergency
Room at Fort Stewart, GA, and the doctors did not know what was going on with
me. I started feeling scared and not knowing what to say or do.
The doctors finally came to a decision, they were going to transfer me to
another hospital in Savannah, GA. They did that. I was admit that Saturday early
evening and left that Wednesday after. While I was in the hospital, I looked
like I was burned with some type of chemical. I had lesions all over my body
from the neck down. I was thinking that I was actually going to die and leave my
son behind, who was 21 months old at the time. But after I was discharged, I was
still swollen and my skin was hurting so bad. It hurt when I walk, sit, stand,
and ever when I take a shower. It hurt my son even more because he missed me
from being in the hospital and he wanted me to pick him up and hold him when I
couldn't.
It took about six months to complete heal up from the lesions that I had. I went
to a dermatologist for about a few weeks. I have to use baby laundry detergent
to wash my clothes in. Now, I am allergic to everything in the book except
Tylenol.
Every now and then, when I get stressed out I break out a little. Or if I use
the wrong lotion, soap, or detergent. Now, I am a mother of two, still going to
school, having vision problems in my left eye, and still living with Steven
Johnson Syndrome.
Thank you for reading my story. -MELISSA DIXON
Name :: Billie Jo Shavers
Email_address :: bossyhawhyn@aol.com
Story :: I'm writing this to update my story. My 2 year old daughter is a steven
johnsons syndrome surviver. On 11-28-26 my husband took her to the doctors, she
was fussy and we thought she had a ear inffection. She went in and the doctor
said she had what they call hand,foot, and mouth virus. The next day after I
was done work. I walked in the house and asked my husband how she was doing. I
looked at her and knew somthing was wrong with her. She was crying and lying
there in so much pain. I told him lets go, we're going to take her to the ER.
We got there and they were shocked of how she looked. They tried so hard to put
an IV in her,after about 8 times they finally got it. At this point they told
us to take her to our primary hospital. We live in makaha (oahu) on the west
side, to get to our primary hospital we had to go all the way in town. And
there was no way we were going to make it there in time, it was traffic hour.
So I asked if we could have an ambulance take her there, and they said yes.
We got to our primary hospital and that's where they told us she has Steven
Johnsons Syndrome. And at first I thought yes they finally know what she has,
it was like so much wieght was lefted off my shoulders. Until they sat me down
and explained it to me. They said SJS is a rare diease and there is no cure for
it. SJS affects the mucus membranes and that at this point they would have to
sadate her. I was hit so hard at that point and didn't really understand
anything. Doctors said it is usually a reaction to medications. So we gave
them the medications she was taking.
The next thing I know was they were taking her so they could sadate her. She
was crying saying no, and that was the last thing I remember her saying besides
I want my cup. They took her in and with in 2minutes they rolled her out. At
this point I didn't expect to see her that way. It was as if she was lying
there lifeless. My heart was heavy, my pain so sore, the tears never stoped
from falling.
Everyday from that point on was so hard. I saw my little baby lying there, and
all her skin from the top of her head to the tips of her toes came off. They
tried to get a plastic surgent to come and see her. She swolled up with what
looked like 10 times her size. She was 25 pounds when she got in and swolled up
to 40 plus pounds. There was alot of wires in her with fluids. They treated
her like a burned paitent. The plastic sergent finally came and said there is
no need to do anything at this point. And that to keep doing what their doing
treating her as a burned paitent. She then had a time when she had fluid in her
lungs. They tested her and she had cought staff, and also roda virus. I was so
confused I didn't know what to do.
For the first time when I saw her when they sadated her I prayed so hard, for
help, for answers, for guidence, for protection, for comfort not only for myself
but for my baby who was suffering.
As days passed she developed new skin, and she was finally making improvements.
Doctors were amazed, all those around her were amazed. She was fighting this
SJS and was making so much progress everyday. She got majority of her skin
back. They were slowly getting her off medications and coming out of sadation.
It was a struggle but she made it through.
She got off the resporator and out of the PICU to the recovery. That was the
hardest thing to see and go through. When she was in recovery she didn't
understand why she had a hard time doing things she use to. She's 2 years old
and wondering what happend. She tried to get up and play but she couldn't, she
wanted so bad to drink something but she couldn't. They did pshyical therepy
with her, speech therepy, everything you name it she was doing.
Before they knew it she was on her way home. 3days later she was back in the
hospital. She had cought roda virus again and had to spend about another week
in there.
Now she is home still recovering, she sees the eye doctor every week. She has
phsyical therepy, speech therepy done here at home. She is sensitive to the sun
light.
People take things for granted, I for one did. Till SJS came into my daughters
life. I had no idea what was to come, I was lost in so much pain as a mother I
couldn't do anything at all but through this trail. I have learned alot.
Thanks for the power of "prayier" and also "Jesus Christ and Our Heavenly
Father" When I felt like I couldn't do anything I was. With my prayers and my
faith. Only then I knew through this, my testimony is so strong that Our
Heavenly Father and Jesus Christ is true. They helped my daughter through this
and helped also our family. With the blessings that were given to us. I will
update more about her recovery as it takes time.
But for now prayiers goes out to those who are suffering also through this trail
that there are those who went through this and can help you get through this
stress, with shoulders you can lean on cry on and more. If you want to write me
feel free to. If I can help someone just by giving my support I will. Till
then thanks to everyone for their prayers.
I read stories here on this web site and my heart was filled with once again the
pain I felt when it first happend I know what it was like to go through this and
my heart just hurts to see and read how many more will go through this till the
cure is found. Pray always and keep everyone in them that is going through this
SJS.
Name :: Jessica
Email_address :: Jaybugs2005@yahoo.com
Story :: I have epilepsy and I always felt that it somewhat controlled my life
but I tried keep my head held high. One day I took my seizure medication (
tegretol ) and I broke out wih steven johnson syndrome on 3 fingers of my left
hand and lower abdomen. I got it in the end of november and was hospitalized
from then through december and the beginning of january. My seizures has always
depressed me and now that I have steven johnson syndrome it depresses me even
more. And I will always have the scars to show for it. My mom feels that since I
am always getting sick...she doesn't want me to get a job. Instead, she wants me
to apply for social security...call me crazy but I juss don't want to. I feel as
though my dieases are taking away my independence. I'm trying my best not to
complain because I know that there are people out there who are going through a
much more difficult time than myself but at other times I feel that I need to
somewhat vent. I want to have a job and I want things to go back to normal. I am
only 19 years old and already have to go bankrupt because I can't afford my
hospital bills. My mom tells me not to worry because I don't have anything that
they can take away...but I don't want bad credit! I'm only 19 and I feel that I
shouldn't have to go bankrupt but it is my only option. I'm in debt before my
life has even begun. Maybe this is supposed to happen to me...maybe it's just
karma...or maybe I asked for it but I just don't know what to do. I know there
are people out there going through so much more than I am...but I am so broke
and I have doctors trying to take away something I don't have. This isn't my
idea of fun. And now my full time job is babysitting my 3 foster sisters that I
don't always get along with and I don't even get paid for this. The only one I
can talk to is my b/f and I can't even see him as often as I would like to.
Sometimes I wish I would get better overnight...other times I wished that it
would get infected and juss be over. But I'm still living so I must be able to
overcome this right? I don't know. Thanx for allowing me to talk about it.
Name :: Aleisha
Email_address :: cheekyleishii@hotmail.com
Story :: Hi,
My name's Aleisha, and I'm an SJS survivor. Clearly, more awareness needs to
be made on this syndrome and I'm glad to see websites such as this one.
When I was 8, a call-out doctor thought I had scarlet fever and injected me
with a massive dose of penicillan. I remember clutching my mum's hand, with
her telling me 'it'll be okay.' Even though it hurt, I was a young child,
and my parents had faith in the doctor.
I woke up several days later, and I couldn't open my eyes. They were stuck
together. I didn't realise my brain was probably fevered as well, which you
don't- you just know you feel very sick.
Some of my memories are very blurred, esp. b/c I was so young but I feel I
owe it to everyone here to relay my story as best I can.
I was in hospital for a month, I lost weight, and I must have lost
consioucness for a good period of time too, b/c I can't remember a lot of my
time there. The time I do remember after waking up was- it being painful to
eat, my vision extremely blurred, and looking in the mirror to see someone
ugly. Not me at all.
Ofcourse the burning red skin, the same as burn victims, was there but my
Dad was with me. That was all that mattered at that stage. He was with me
all the time, or most of the time anyway. He had a cot next to my bed. (I'm
crying as I write this, because not long after I came home from hospital, my
parents seperated and my father proceeded to commit suicide).
I didn't really believe I was going to die, in my moments of clarity.
In the night, I'd have what I realise now were auditory hallucinations-
every night, I believeed the train outside (there are no trains outside the
Geelong Hospital) was talking to me. But I'd prefer to see it as a child's
imagination doing what it could so I could get through!
I remember, towards the end, one of the specialists who came to look at me,
diagnosing me as having SJS.
Two drips saved my life.
I didn't go back to school for almost a year. My fingernails regrew
themselves and I finally became strong enough to go back.
My new primary school teacher was shocked I was such a good speller as I'd
missed a whole year of school, I was still coming top of tests!
I believe this is where I developed a love of reading even greater than ever
before, and although I was told not to as it could strain my eyes- I believe
it not only strengthened them it helped me learn to focus them properly
again.
My eyes have proven to be the most painful reminder of me of my illness- I'm
22 now and still see a specialist regularly as I have severe ulcerative
corneal scarring, severe dry eye syndrome, sensitivity to light, heat, dirt,
dust, and using computers and pain. I use Bion artificial tears every 20 min
in my left eye,and not so often in my right. Not that my right eye is any
better, it just actually has tears!
I've had flare-ups over the years and been rushed to The Royal Eye and Ear
in Melbourne, but luckily I've found an excellent doctor in my hometown.
Thankfully, I have almost 20/20 vision! And unless one were to study my eyes
very very closely (unless they were a doctor), they appear normal most of
the time. Beautiful even. My eyelashes may have even grown back stronger,
thicker and blacker, in my body's attempt to renew itself.
When they do get bright red and sore, I just wear sunglasses indoors and
don't give a damn what anyone else thinks.
We tried to sue several years ago, I wanted to and so did mum, for this
condition had been causing such physical and mental stress in my adult life.
The lawyer couldn't find any information on penicillan being the cause. Even
now, some doctors claim SJS can only be caused by a sulfa- related allergic
reaction. This is not the case, as I've read on here- other people have had
SJS from penicillan.
We need more doctors willing to specialise and really study this illness.
Some of the conditions mentioned, such as the man from india- his watery eye
will resolve itself. It did with me, mum told me I was going to get a
massive hole in my skin if I kepy wiping my right eye. Lol. It stopped
running constantly, although the condition sometimes recurs, just hang in
there! I'd do anything for my left eye to have a single tear.
The body is an amazing creation and can heal itself over time given proper
care.
Thanks to everyone for listening
Aleisha in Australia
Ps. Please feel free to contact me - cheekyleishii@hotmail.com
Name :: Tracey A. Jones
Email_address :: Traceyloves@aol.com
Story :: My 15 year old daughter went to the dermatologist for an acne problem
and she was prescribed Septra, a sulfa medication. After taking this medication
for 15 days something started happening and there was nothing I could do about
it. She had SJS and it eventually went to the TENs stage and then a long
recovery. That was two years ago, April of 2005. Today she is recovered,
caught up in school, and will be attending Purdue University in August of 2007.
God has blessed our daughter and our family tremendously. There are a few
slight problems that we are still waiting to be fixed. One is her eyes as the
drainage system is slightly damaged so her eyes water a bit along with dry eye
where she has to put lubricant in them each night and use eye drops throughout
the day. The other problem is her finger and toe nails as they are coming back
but they are different, kind of rippled. Her skin is a little splotchy however
a little makeup and you can’t really tell. She has a positive attitude and
realizes that God is truly with her.
Name :: Caryn Perkins
Story :: Hello,
Here is my story that I have wanted to share on this website for some time, but
I have been avoiding coming here because it is very emotional for me to re-live
what happened to me about one year ago... In fact as I type this now, there are
tears in my eyes because it was so tramatic. (I suppose this is just another
phase of the healing process) While you are reading this I want you to know
that I have come back to share my story in hopes that it can help someone who
may have had a similar experience. I read through so many of these stories here
hoping to find someone who went through the same experience as well.
So at the age of 36 last winter, I woke up one monring with my feet itching. I
checked them and found there were several red raised welts that looked like
spider bites and I thought to myself "my goodness some spider really had a
feast!" And it really itched so I put my feet in cold water to see if that
would cool them down... but as time went by the itching turned into a burning
sensation and I noticed that it was starting to spread to other parts of my
feet. I figured I was just having a bad reaction to something and that it would
go away on it's own.
Day two I woke up with the red welts on my ankles and knees. The pattern of
welts were identical in each leg, in other words they mirrored each other
perfectly and I thought that was very odd... So of course I went to see the
doctor the next day and at this point the welts were all over my legs and waist.
The doctor thought that I had a bad reaction to wearing nylons. She prescribed
oral steroids and antihistimines and said that I would be fine to go on the
Arizona vacation I was to leave for on the next day. She said not to worry and
that I'd be better in about 2 days.
But after 2 days the welts are now so red it looks as though my skin was falling
apart... transparent... awful looking like hamburger meat.... very scary....
escpecially down in Arizona away from home in a hotel where I suddenly can't
breathe and my arms and chest and mouth have the "rash" too. So my boyfriend
took me to the nearby ER... they give me all kinds of stuff but they cant figure
out what is wrong with me... I had some sort of seizure from all the medication
and 102 fever... I had a near death experience and met my grandfather for a few
seconds.... it was very comforting to meet him again. He was both crying and
smiling.... I thought that was the end of my time here...
But then the ER people somehow were able to pull me back. I don't know what
they gave me but they sent me on my way with lots of steroids and oinment and
said I would be fine. Both me and my boyfriend thought they were crazy to
release me so we got on the next plane back home.
That night my fever was 103 and my skin was so scary... This time my mother took
me to the ER and a dermatologist happened to be walking down the hall and my
doctor asked him to take a look at me. He was the first person to pin point
what I had... he asked me if I took any ibuprofin... and I said yes I took one
the night before all this happened... and I remember thinking that how could
this happen from taking an Advil?.... He admitted me to the ER immediately and
said it was life threatening. There were internists, and several other doctors
trying to figure out what to do for me.
So may steroids were given to me...
I think 1400 mgs was the going rate for a while.
I thought that I would never see my beautiful skin again. I was so scared.
So, the ICU took care of me for 1day. the next 4 were in the hospital. I also
must metion that during this whole 5 days I could hardly breathe.... very very
difficult to take a breath at all and very rapid breathing.. but this was the
least of my worries because my skin was on fire!
By the 4 and 5th day I was getting a litttle better so they sent me home on
steroids and antihistimines which I took for the next 2 months. I am so
grateful for the steroids they saved my life. they did cause me to loose so
much hair. It took my skin about 3 months to heal ( my feet are still sensitive
to heat and pressure) but now after a year, no one would ever be able to tell
what I went through...
I guess my story is not as bad as others here on this site... for some reason my
mucous membranes were not affected like so many people here on this site.. I
sometimes wonder if I had not been put on so many steroids what would have
happened because I was slowly being taken over by the reaction. Eve though mine
was only with the skin it was very tramatic for me to feel like it was on fire
and be able to see through it.
I can't believe that something like ibuprofen could do this to someone.
Last year a day wounldn't go by that I would not think about it and have anxiety
about it.
These days, I still have times when I panic if something looks red on my skin
and sometime my feet bother me at night and keep me awake so I try not to take
too hot of showers or wear tight socks. I probably should have gone to see a
therapist for my panic and anxiety about the experience but I feel that now
since so much time has gone by somehow the time does seem to heal some wounds.
Who ever is reading this, I pray often for you and all the people and kids out
there with SJS and I hope that they can be ok again...
Name :: Danielle Brown
Email_address :: Ladyd10@alltel.net
Story :: My daughter is 11years old a six grader. She came home from school one
day saying her ear was swelling,so I looked @ her ear and noticed that it was
swollen, I told her oh it's ok it's probably from sweating and dirt accumulation
so she went on a day or two and finally the swelling started to travel into her
face and I knew something was wrong, so I decided to take her to the ER, the ER
was full so I went to a local med stop, she was placed on Augmentin and sent
home, th enext day it seemed as if the sweeling was going away, but later that
evening she began to swell again so I called the med stop and they sat up an
appointment with a ENT and the day once there he informed me that he needed to
due surgery because it was impacted. So the surgery went fine she was in the
hospital for two days and sent home on Bactrium (antibiotic), two weeks later my
daughter came home from school with red swollen eyes and blisters on or lips, I
was thinking maybe its allergies, we live in Georgia and the pollen in Ga is
really thick this time of year, so I gave her a Clartin to take and she went to
bed , thenext morning she had more swelling in her mouth and on her lips, so I
knew I had better get to the doctor. Once there the doctor admitted her
immediatly into the hospital, within an hour she had broken out over her upper
body, and as the day progressed it continued to travel to her lower extremities,
she was placed on IV fluids and meds. Once the meds got into her system it
seemed like the reaction was coming out more and I guess that's what the doctors
want to happen. I then called my husband and informed him that she was in the
hospital and what the diagnosis were. We then called our family and started
praying asking God to heal her body and bless her mind. The eye doctor came in
and performed a eye exam and stated her eyes are fine thank you Jesus, and asked
if he could say a prayer and by all means I said yes. He prayed and said if you
need anything give me a call, the Dermertalogist came and gave some creams to
apply to her body and encouraged her to drink much water if she could. My mother
who is God fearing woman called her pastor and they began to pray and petition
God for healing as well, we did not know ther danger my child was in but God
knew and he healed her body, while in the hospital we had no fever, thank you
Jesus and the blisters are healing thank you Jesus. Once we came home I started
surfing the webb trying to learn about this disease or condition, and to my
surprise its a really serious problem, and can be fatal. All honor goes to God
for the amazing miracle he has performed
Name :: Billie Jo Shavers
Email_address :: bossyhawhyn@aol.com
Story :: This is an update on my 2 year old daughter who was diagnosed with SJS on 11-29-06. Since 11-29-07 she was sedated due to SJS. She was sedated for about 3 months. During that time it was so hard to deal with as a parent. Not only is it hard for the person who has SJS it but also the family.
During her fight against SJS she also had caught Rotavirus, and staff. She was on an (oselator) a special respiratory machine that pumps 100 short breaths in a minute. She had about 20 different wires going in her. For fluid, she lost all her skin from the top of her head to the tips of her toes. She was wrapped in gauze and treated as a burn patient. She went in a 22 pounds and swelled to 40 pounds, due to all the fluids going in her. They were afraid that she may have needed plastic surgery because where would they get the skin from, she lost it all.
As the SJS was running it's course, it finally started to come together. She got of the (oselator) and on a (ventilator) a repertory machine that breaths like regular breaths where it makes the chest rise and drop. They were going down on her medications also. She was on a lot of morphine, and versed. They were coming down from it so she could get off the (ventilator) and breath on her own.
She had gone through a lot at her young age. Just the SJS alone was big enough for her. But there also was the withdraws of the medications that she had to go through, the breathing on her own that she had to go through, it was as though she had to start over and at her age and all that she went through she was confused she knew something happened to her but couldn't understand what it was. She was doing physical therapy with the (ventilator) and that was a scary thing to watch, because the tube wasn't secured, with any movement it could fall out but she did it without it falling out. More so they wanted it out.
The day she got it out was the most beautiful day. They told us not to be surprise that when she talks we're only going to hear a whisper. We said we didn't care what comes out as long as she is doing okay with that big change of breathing on her own, they also told us that she may not remember us for a while till she gets off all her medications. They had warned us that there might be a chance she would have to go back on if she has a hard time breathing, and we understood. But doctors wanted to give her a chance because she was improving fast. Well, both my husband and I plan that. On this day we were going to surprise our other kids. We have 5 kids. So our other 4 were finally going to see their baby sister, for the first time since 11-29-06. When they got the news they were so excited, we picked them up from school. And checked with the doctors if they had took the (ventilator) off and they did. So our other 4 kids were about to do their daily routine. Which was sit in the lobby and watch TV and do their homework. But we told them to come with us to see their sister. The smiles on their faces I will never forget. See they haven't seen their sister since 11-29-06 but they knew what she was going through because we told them everything it's just we didn't let them see her that way because it would have scare them. And we didn't want that.
Well this is how it went. As we all 6 of us walked in to the PICU. Everyone there just crowed us nurses and doctors, it was the most heart felt moment. As each of us walked into her room. She said Mama, Daddy, Fat boy(her brother), Ali (her sister), Braddah( her brother) and Fay Fay (her sister) and it was so clear. Her voice came out harsh but she had a voice, and not only that she knew who we were right off hand and nurses,and doctors were so amazed. Everyone had tears in their eyes knowing all that she has been through at 2 years old and had accomplished.
She had this look in her eyes like seeming to not know what had happened but knows something did. Things she did you could see that puzzled look in her eyes. She's a smart little girl, and she had struggled a lot. She couldn't figure out why she was having a hard time to stand up and walk, and run, due to how long she was sedated her muscles tightened up so she had to learn how to walk again. And just looking in her eyes you could see how confused she was. She didn't like being in the hospital at one point, she had that look like why am I here why can't I go home. All that was so hard to go through.
But now thanks to "Our Heavenly Father and his son Jesus Christ" they have blessed her and our family. She is now home. She's walking, running, talking, laughing doing everything she use to do. All her skin has grown back, she didn't need plastic surgery at all. She is recovering okay. She has dry eyes, her left eye is stronger then her right eye. She has scarring in the right eye still and see the eye doctor every week. Also she is sensitive to sunlight. She has physical therapy, speech therapy here at home. And so far she is doing great.
My heart goes out to those now who are dealing with this, going through this struggle to fight SJS. God Bless you all with his comfort, strength, and love. You are all in my prayers. And may there be a day that they bless everyone with a cure for this Stevens Johnson Syndrome and let no more suffer from this. Till next time. I'll keep an update to let everyone know how she is doing.
"Heavenly Father and his Son Jesus Christ" loves each and everyone of us. "Pray" (3-19-07)
Name :: tasha
Email_address :: princesstasha123@hotmail.com
Story :: I was diagnosed with sjs a few years ago, my doctor told me i had
it,didnt tell me anything about it, only that there is nothing i can do to stop
the big lesions breaking out everywhereoh and that mostly drug users have it,
are people going to think im a user?i finally looked into the illness myself and
found out the horrific truth about what might happen. I know i am liucky that i
have it no where near as bad as some people on this page and after looking at
the before and after pictures of everyone i cried, you have all been so brave. I
really dont know alot about this illness, no one i know has ever heard of it and
the information is quite sparse really, noone seems to know much about it and my
doctor isnt very helpful. Am I going to go blind? is my skin going to fall off?
Am i going to die?
I pray for any sufferer and really hope those who have it will get better.
Name :: Elizabeth Mohr
Email_address :: em1@frontiernet.net
Story :: I wasn't aware of what I had until stumbling across your website...It
was never diagnosed with anything specific other than allergic reactions to ???
they never knew, in fact, blood tests, allergy tests were run and nothing showed
positive, although my reactions occurred every time I took Ibuprophen, Aspirin,
or Aleve...The first reactions began with the rash on my torso, then within
minutes spread to my thighs and upper body...several times, my lips and tongue
would start to swell, closing off my throat and I ended up in the ER many times
with anaphylactic shock...I had to carry around an epi-pen 24-7, because even
though I stopped taking all of the OTC meds listed above, the reactions would
happen without warning at anytime, and went on for over a year after
discontinuing the drugs.
Name :: tara vitatoe
Email_address :: taravitatoe@hotmail.com
Story :: story about my autistic son.
On March 5, 2007, Jacobie was diagnosed with Steven Johnson Syndrome/TENS (Toxic
Epidermal Necrolysis) Toxic epidermal necrolysis (TEN) is a life-threatening
skin disorder that can be caused by an allergic reaction to drugs. Jacobie
acquired TENS after being treated with phenytoin. Phenytoin is a drug given to
control seizures.
Jacobie's symptoms included:
peeling of the skin in sheets, leaving large raw areas of open flesh.
loss and damage of skin, similar to what occurs in burn victims.
Skin peels without blistering
Considerable pain and discomfort
Fever
Spread to the mucous membranes in the eyes, mouth and genitals
Information on TENS:
Toxic epidermal necrolysis occurs worldwide at a rate of 0.4- to 1.2-cases per
million population. TEN has a mortality rate of up to 40%. The loss of skin
leaves TEN patients open to bacterial and fungal infection; these are the
primary causes of death. Lesions of mucous membranes in the mouth and digestive
tract make patients intolerant of drinking or eating. Lesions and scarring in
the respiratory system leads to difficulty in breathing or may require the use
of breathing aids. Corneal ulcers can lead to blindness and patients may require
corneal transplants after the lesions have subsided.
Jacobie's was admitted onto the pediatric unit, at Memorial Hospital, under the
supervision of Dr. Damian Meehan on March 5, 2007.
His treatment consists of:
Children's motrin- reduce fever
Prednisone
Lortab tablets- pain
After unsuccessful treatment at Memorial Hospital, Jacobie was transferred to
Shriner's Children Burn Unit at Galveston.
On arrival, Jacobie had second degree burns on over ninety-five percent of his
body. He also had diffuse involvement of his oral mucosa and eyes. He was
intubated to protect his airway. Skin grafts taken from cultured pig skin
substitutes were placed on his body, covering large open wound areas until
healing can occur. After approximately three weeks, he was stabilized and
extubated.
On March 26, he was discharged from the Shriners. Although, he has ongoing
seizures and a contracture in his right arm, Jacobie is recovering very well.
Thanks for contiune support and prayers.
Love JACOBIE AND FAMILY.
Jacobie is 16 years old. October 11 is his birthday. He has a vp shunt in the
right ventricle of his brain, due to complications at birth. And he has autism.
Shriner's is a non-profit organization that was very generous. This
organization provided a state-of-the art "free" care for her son.
Name :: Carmen
Email_address :: brownsugar2001@aol.com
Story ::
Hi My Name Is Carmen
and I wrote my story 2 years ago about my mother in critical
condition at the ICU,It was on April 2005 when my mother steped inside the
emergency room with a fever of 106 and blisters all over her body and eyes,she
had no idea what was
happening to her and the doctors either,
I was Living in texas when I get the call from my older
brother telling me that mom was at the ICU,I became very
confuse because when I left miami mom was very healthty.
by the next day I was in Miami I remeber steping into that
ICU that morning and the only reason I knew that was mom
was because I remeber her hair,everything was burn
the doctor walks up to me and tell me we finally know what
your mother has is called Steven Johnson Sydrome,I really
didnot know what he was talking about.
well days pass by and my mom was still fighting for her life
she was asleep for 3 months,her kindneys stoped working
and I really thought I was losing my mother,I was able to stay strong thanks to
my family that came from New york and Puerto rico and texas and especially god.
well time pass very slow to me,but one morning I go into my
mother's room in the ICU and her eyes are open her kindneys are back it was a
miracle my mother was back.
she when through so much,she was intubated,she had 10 blood transfusion,she was
put in dialysis,she struggled with her blood pressure going up and down with
infection I was so glad that my nightmare was almost over.
My Mother made it she was put into rehab for 1 month
to recover the only problem now is her vision is not very good,but other then
that she is doing great she is with me in
texas now and I take very good care of her.
I always pray for those family that might be going through
what I did may god bless them and heal them
Name :: mj
Email_address :: sistamj@hotmail.com
Story :: I experienced sjs in Oct. 2006 after taking Dilatin for seizures and I
have suffered loss of my business and still haven't been given any assistance
from Soc. Sec. God has been blessing me to survive and raise my kids. This is
six months down the line and I'm wondering is there anyone who has experienced
breathing problems from this because I've had the worst cough and now I'm using
an inhaler and my body has become very sensitive to chemicals that didn't bother
me before. Could this be a reaction to SJS?
Name :: Cheryl Ricciuti
Email_address :: ccaaggrr@verizon.net
Story :: In September of 2002 i was stricken ill with what the ER doc said was
the flu. He never even touched me and had made his decision of what was wrong.
Just 3 weeks prior i was prescribed motrin for my arthritis. I was intructed to
double my dose of motrin for swelling and tylenol for the fever and pain and
tums for the upset stomach that could not handle what was happening. Withing 5
days i was life flighted out of my town. I barely made it to the hospital as my
heart had stopped along the way, so i was told. Six weeks in a burn icu with
another eight in the hospital. From there i was sent to rehab. I was unable to
retain any food or liquid. It was suspected it was all in my head. Not so!
Little did they know that the inside of me was in distress. At that time my
hospital and staff knew little about what was happening and how to treat the
whole body. They assumed it was just happening to my outside. Because of the
damage that had been done by scarred tissue and the sloughing my digestive
system was shall we say plugged. I was sent home to pass away there.
There is so much more to tell but not really needed. Except to tell you what i
am left with for problems. Along with scarred tissue and pores and what has
happened on the digestive system that they are looking into, i have dry eye, dry
mouth, loss of teeth and teeth enamel, light sensitive and a week right eye. I
have memory loss, hearing loss and loss of color distinction. My ACTH spikes
higher than normal and my blood pressure is in the low 80's 0ver 50s. Also as a
result of the SJS, i was put on steroids to help with the healing. As a direct
result of this drug i am faced now with
Avascular Necrosis of my joint bones. This is in both knees and hips. The
necrosis is vast and severe leaving me with many operations to come along with
knee and hip replacements. This has taken 4 years of pain and problems to
discover this issue and get to start dealing with it.
If anyone is going through this, i would love to hear from you.
thanks for listening
Cheryl
Name :: LYNN aTKINSON
Email_address :: atkinsonlynn@hotmail.com
Story :: WELL MY STORY THY GAVE ME A PILL CALLED EFFER AN I GOT SO SICK I WAS
BURN ALL OVER MY BODY I WAS VERY SICK AN STILL AM WHEN I GOT SJS I HAVE NEVER
BEEN THE SAME AN DONT THINK I WILL BE AGAIN I GOT IT AT 43YEARS OF AGE AN IAM 45
NOW AN STILL SICK I THINK SJS IS WHAT MADE ME SICK ALL THE TIME NO THY SAY I
HAVE NEAVE PROPLEMS AN MY RIGHT LEG IS GONE NOW IT STILL THERE BUT CAN BEARLY
WALK I HOPE NO ONE GET SJS I NO IT HAS CHANGE MY LIFE FOR GOOD THATS TO PILL
ANYWAY THAT MY SHORT STORY BUT IAM STILL MAD I GOT IT SJS
Name :: Carolyn Harrisa
Email_address :: charris@leakesd.k12.ms
Story :: My sister has TEN, which is more severe thatn SJS. She is in critcal now
and had been for four weeks. Her kidney has shut down on her over 75 percent of
her body is affected. She is a diabetic, and infected. One of her legs needs
ampitating, but because the TEN is so severe, the doctors are unable to do the
surgery. I am asking for anyone to help my sister and our family. I had never
head of this disorder until now.
Name :: Michelle Claiche
Email_address :: m_claiche@yahoo.com
Story :: I was only five years old when I was stricken with SJS. My memories of
that time are foggy, being I was so sick, but what I do remember, changed my
life forever.
I was a happy, bubbly girl enjoying my first year of school and making lots of
new friends. I was sick a lot, and missed school often, but I had been sort of
sickly all my life, so it wasn't out of the ordinary. Then I developed pink eye
in early december and my mom took me to the doctor for medication.
I got pink eye often and the doctor gave me a popular eye ointment used for pink
eye treatment.
I'm not sure how long I went with out other symptoms, maybe a day or two, but
then I suddenly developed a fever and a blistering rash resembling chicken pox.
My parents thought that's exactly what it was since I had just started school
and some of my friends had already had it. But within a few days, it was
obviously it was something much more serious.
My fever continued to climb, I refused to eat and drink and the rash spread
everywhere. My eyes, mouth, lips, vagina, urethra and skin were covered and
seemed to be shedding it's lining.
My mother always talks about the day I was rushed to the doctor because I was
hallucinating from the fever. I was pointing at the ceiling crying for her to
"catch the boxes falling from the walls..." they were terrorfied.
My parents rushed me to my pediatrician and he examined me carefully. He said
it definatly was not chicken pox, and seemed too serious to be measles. He
hadn't the slightest clue what it was, but he knew I was deteriorating and he
sent me to the local hospital to get and IV to rehydrate me and then they wanted
to send me to Sutter Memorial in Sacramento, CA. for further examination.
Of all the things I don't remember, one thing I did remember was riding in the
car with an IV plugged in my arm and laying lifeless in the back seat. My
mother was crying and asking my dad if I was going to be okay.
My dad is a doctor at our local hospital and when he, the doctor, said he didn't
know, my mother cried harder.
I remember leaving the examining room, having a new IV installed and being led
to my room at Sutter Memorial. The doctor we were refered to took one look at
me and said right away that it was SJS.
I stayed in the hospital for 7 days. I hardly ate, couldn't urinate because it
burned so bad and developed pneumonia during my stay. The rash faded quickly,
though, and wasn't nearly as debilitating as it usually is in other cases.
Although the skin on my lips did fall off, but I have no scarring from that.
The sadest thing about being in the hospital was that it was the week of
Christmas and although I didn't feel like playing it was depressing. I remember
all the decorations in the hallways of the hospital and the caroling and toys...
But the staff worked hard to get me out before Christmas and I was so happy when
my parents came into my room on Christmas day and told me I was going home!
My whole family was waiting for me when I got there and I remember eating
Frosted Flakes and everyone cheered.
It took me months to recover. I spent a lot of days in my parents dark bedroom
as I couldn't stand bright light and crying because my little brother could go
out and play, but I couldn't.
My Kindergarten teacher was great and brought schoolwork home to me so I
wouldn't fall behind, and I did graduate kindergarten that year.
Because of the illness though I got very depressed and became antisocial and had
to be moved around a lot in school until I found good teachers.
I also have pemanent scars, which are hardly noticable and permanent eye
problems. I have to wear sunglasses outside, and glassed to read and I have
persistent dry eye. If I pull my eyelids down the purple scars are a reminder
of the havoc the disease put me through.
The doctors think the sulfa drugs in the eye ointment was the cause of this rare
and debilitating allergic reaction. I see people on TV telling their stories
about SJS and I recently realized what a big deal it is. I was lucky, and
didn't suffer nearly as much as others have with this disease, and my heart goes
out to all those and their families that are effected.
If anyone has any questions feel free to email me anytime.
**Michelle Claiche**
Name :: susie torres
Email_address :: susiecortes@aol.com
Story :: Today, we lost our sister , Cathy to this syndrome. Cathy was a 39 year
old, mother and U.S. National Guard, Recruiter from Guam. She was young and full
of energy. Her death left a void in our lives and to those that she touch. This
is how her story started.
It was a usual day, like any other day, off to work at the recruiter's office.
Doing what she like best, encourging youth and young adults to serve their
country. She even recurited her young daughter, Leslie. That's how much she
advocated for the service of her country.
She then notice a boil on her back leg. She left early to go to the clinic, on
base. The doctor's assistance prescribe her an antibotics. She eats this and
she developed rash and that when the night mare begins.
Within hours after taking this medication she could'nt breath she was rush to
the hosipital and admited to the intensive care. The monster had arrived. It
found Cathy. She had burns on her face, neck and upper body. She was put on a
breathing tube.
I could'nt recognized her. Many questions had arrised, What is going on with
her. Then the awful news. It was stevenJohnson syndrome. She was air lifted to
the Brooke Army Hospital, burn unit, where she fought this monster for 12 days.
It was overwhelming for her, her body and her young heart. She fought like a
true soilder, the battle of fires within. The world had lost another life to
this syndrome.
