Name :: Nadier Thermutis Naadu Lawson
Email_address :: nadier.lawson@yahoo.co.uk
Story :: In Januaury 1996, I had a reaction to Septrin(Sulpha) resulting in
Steven Johnsons Syndrome. I was in intensive care for about two months. My
entire body, nails and eyes suffered. I had some good vision in my Left eye and
the right eye was blurred and dry.
In 2001, the vision in my left eye deteriorated with scarred tissue covering two
thirds of my cornea, and my contact lenses no longer made an impact. Later in
the year, I had a surgical procedure which improved my vision a lot but i
noticed with time, that my eye got too sensitive and could not tolerate any kind
of contact lenses.
Ten years on (2006), my vision has become severely impaired. Both eyes are now
photosensitive and extremely dry.
I haveoften heard that once there is life, there is hope! and indeed, The Grae
of God has sustained me to date and I look forward to the future with hope.
Regardless.
Name :: Tina DaMotta of SC
Email_address :: Tigger121862@yahoo.com
Story :: I am 43 years old. I started with the SJS on 4/11/06. I had
no idea what this was until I got it. My heart goes out to all of
you who have gotten it too. And your family and friends. My story is not as bad
as most of you.
My SJS came from taking Celebrex. Percribed by my Pain specialist. Who knew I
had a allergic reaction to Sulfa drugs. But he said he does have time to check
out every perscription he writes. What a joke a pain specialist that cause me
pain. See him in court.
I had the lesions in my mouth down my throat, in all my
mucis membrane areas. My eye lids and ear lobs were the
worsed. When I touched them my skin slided open. My face and neck was the worsed
for the rash. But it also was on my arms, legs, stomack and back.
Before being hospitalized I could not pea, or eat it hurt to much. I lost 10 lb
in 3days. Was in the hospital for 6 days.
At present (08/04/06) I am doing much better. I have dry
eye, my inside of my nose and mouth is dry often. I still
hava a lesions on the back of my throat. My spots are fading
with some bleaching cream I got from my dermatologist.
I have to take a break from using it. Because I think it
causing my dry mouth and nose from putting the cream on
my face.
The most frustrating thing about this is most Doctors don't
see the seriousness in this and don't know what they should
know in order to help correctly. Hint check out the SJS web
site. They don't have time or don't care.
My prayers are with you all and when I get my settlement.
I will make a donation to what would be most helpful. Let
me know.
Tina
Name :: kimberley brakefield
Email_address :: kimberleycreameans@yahoo.com
Story :: My five year old daughter, Justice (Miss Priss) was diagnosed
with chicken pox July 21, 2006 at Poplar Bluff, Mo., and sent home with
motrin for her very high fever. Before I could make it home with her,
her fever had reached 105. I stopped off at my sister's house, and
gave Justice a bath to try to lower her fever. There were still no
changes in her fever, so I called her doctor back, and he replied "bring her
back." At this time I was so scared that I called Pocahontas 911. An
ambulance took her to Randolph County Hospital. At this time they
tried to tell me that she had no fever, so I left in my truck, and rushed
her back to Poplar Bluff. Her doctor admitted her immediately. He put
her on fluids for dehydration, tylenol syposatorys, motrin for fever.
The next morning; her doctor came in and diagnosed her with SJS. He
then made arrangements to transport her to St. Louis. At this time she
was put on the eight floor, and given more motrin for her fever; even
after being diagnosed with SJS. I was the one that had to tell them "no
more, it's hurting her." She stayed on the eight floor for one night;
the next morning she was moved to PICU. Her condition had worsened
over night, because of all the motrin she was given. She was on PICU for
one week. She died Sunday July 30, 2006; she was five years old. If I
had only known about SJS, I would have never gave her motrin. She
suffered for 9 days and 8 nights. Day after day, the doctors and
speacialists told me and the rest of the family that she was going to be fine.
Even that morning, the RN assured me that she would be fine. She passed
away before noon. If other mothers' knew about the chances of SJS
occuring after taking motrin, motrin would be taken of the shelve. I will
love her forever and miss her every minute of the day.
Name :: ivy alvir
Story :: hi, just this past week my 20 month old son was diagnose with sjs. It
was the worst week my husband and i have been through, not knowing what my son
had at the beginning and seing the symtoms get worse everyday. My son started
with a fever and the next day a really bad rash broke all over his body. We took
him to the doctor and they told us it was some kind of virus and it'll go away
in a day or two. My son had a 104 degree fever and we did all we could to bring
it down, we then took him to the doctor immediately as the rash spread through
his face, head, arms, legs and part of his genital. All the doctor could tell us
was, he had no idea what it was and he sent us to a pediatritian specilist. They
took blood for testing and the next morning he woke up with his right eye
swollen. We didn't think twice to take him to the emergency room, thank good it
was only his skin that was affected and he recovered two days after. We found
out that he's allergic to penocillin, since he was taking amoxicillin before the
sjs for ear infection and he had a reaction before to cefcil. if the doctor was
only aware of sjs, it would have saved us a lot of heart ache. Thanks to
wedsites like this that i could breath a little easier knowing what my son has
and how to handle it if it happens again in the future.
Name :: Talisa Lightsey
Story :: My name is Talisa Lightsey. We live in Blakely Georgia. Sammy and I
have 2 children. Walt is 16 and Clara Beth is 12. This is my story .. When
Walt was 8, he began showing signs of a disease called Mytonia Congentia. Both
Sammy and his dad have it. It is a neurological problem that causes their
muscles to tighten up. Walt's really does not bother him except when he tries
to play sports. It causes some delay because he becomes stiff. We saw a
neurologist at Children's Hospital in Birmingham, Alabama who put him on
Dialantin. This seizure medication has been used to treat Mytonia with good
results. Walt is very athletic and because he loves playing ball, we did not
want him to become discourged over something that we could help "fix". Please
understand that we are not the kind of parents that think our kids have to be
the star player. We were just trying to help him deal with the Mytonia. On the
13th day of taking the medication, his face started getting really red. It was
mainly his cheeks. It seemed to get worse very quick. His doctor in B'ham was
out of town. We took him to our local ER. They said he had 5ths disease.
Sammy's sister is a RN and after she came over to check on him she did some
research and called us and pleaded with us to take him back to the ER and ask
them to check for Stevens Johnson"s. We went back to the ER, only to be told
that Stevens Johnson's was very rare and not to
worry. The next morning things were worse. His little face looked so bad and
his mouth was one big blister on the inside. His back was starting to get
blisters and patches on his legs. We took him to the doctor again, only to be
told it was 5ths agian. We called B'ham and were able to speak with our doctor
who was back from her conference. She ask me several questions. The one that
stands out for me is.. Are the whites of his eyes turning yellow? When I looked
really good.. they were turning a yellow tint. She said,"Get your clothes
together and I will see you in my office in 4 hours"
We are about 4 hours from B'ham. As soon as we arrived, we were very busy for a
few hours. Several test on his liver showed some damage but not dangerous. 8
or 10 different doctors came in to give their thoughts. Everyone of them agreed
that it was indeed Stevens Johnson's. We were very lucky because it did not get
any worse than that day. He did not have to be admitted and has no lasting
effects from the ordeal. He did need glasses shortly after. His liver is fine.
Thank goodness our story had a happy ending. The what ifs are very scary. What
if he had taken one more dose of the dialantin? What if Sammy's sister had not
been a nurse? What if we had listened to the ER doctor? The hardest part for
us was the fact that the medication was not nessesary. It was used only to help
ease the muscle stiffness to play baseball a little easier. We felt like we
were helping him when in reality we almost killed him. He is 16 now and very
healthy. We try very hard not to give him any kind of medication. Everytime he
takes even an Advil, I think about that whole frightening thing. My prayers
are with each and every parent that goes through this. Our story is so mild to
some that I hear. The one thing that I learned from this ir your time. May God be with you and your journey.
Talisa
Lightsey
Name :: Andry
Story :: My daughter Andry was 8 years old when she got SJS. It was in December 2003 when she came back from school with fever. She took paracetamol and I immediatly noticed something strange because the fever didn't go down. After 48 hours, she has been visited by a doctor of the hospital and he prescribed her an antibiotic because her throat was a little infiammated and always very high fever. The day after, I went again to the hospital. She was admitting in the pediatric dept. where doctors diagnosticated mononucleosi because her white corpuscles were low ; antibiotic were suspended (Augmentin) but nothing for the paracetamol. During the night , she has had all symptoms of SJS : swelling face, eyes shut with pus, fewer, blisters, mooth lesions and respiratory difficulties, . The next day, she has been transferred in Intensive Therapy with acute respiratory crisis where she stayed 33 days. Specialists (Oculist , dermatologist and infettivologo ) were called for the consultation and they found it was SJS. She will be under paracetamol for 3 days more . I told the doctors that SJS and all symptoms of my daughter were indicated on the medecine for paracetamol and Augmentin too and only at this moment, doctors realised that paracetamol could be responsable too. After hospital, she remained at home for 9 months and it has been very difficult for all the family. She got ulcere in the right eye, she developped lungs problems and recurrent fever , she remained few months with low white corpuscles. Recently, we came to Dr. Scheffer Tseng for her eyes because her right cornea is already opaque. He is optimist to the possibility to restore the sight to our daughter but we have to wait some years before doing something. In the meantime, she used artificial tears every hour and eyerlahes have to be take off every 2 weeks. The last winter, she used antibiotic for 6 months to prevent infection in her lungs. At the last checking, her lungs are very much better and since one year, she became physically more resistant. Andry doesn't want to remember the SJS and she is living as nothing is happened. For us is very different but the more important is she could have a quite normal young girl life.
Name :: Nancy Lucke
Story :: My father, Paul Berdsely, age 93, passed away on August 1, 2006, from
Steven Johnson Syndrome.
He was admitted to the hospital on July 14 due to a fall. He had fallen
outdoors and it was a very hot day. He was outside for approximately 1 hour and
45 minutes in the sun. That would normally seem a long time, however, he loved
to lay out in the warm sun for 1 hour each day. The fall caused him to hit his
head and lose consciousness. When he arrived at the hospital by ambulance he
had a fever of close to 103. He was given an antibiotic, Avelox. Only 1 dose
was given around 4:30 p.m. He woke up from the unconsiousness about 2 hours
later and was able to communiate, although a little confused. At 3 a.m. the
next morning, I was by his bedside and noticed that his legs were very swollen.
The nurse came in and removed the "pump" socks they had put on him earlier in
the evening, and both his legs were covered with many blisters about the size of
your hand. They went from about his pelvis to the bottoms of his feet. The
nurse called in the intensevist at the hospital and he immediately diagnosed the
Stevens-Johnson syndrome. He remained in the hospital for 1 week and then was
sent to a nursing home for wound care treatment. He was there for two weeks.
While there he began to develop infection in the legs. On Monday, July 31 he
was transferred back to the hopsital. He passed away the following day at 12:30
p.m. His death certificate list the cause of death as Stevens-Johnson.
I tell the story because it was such a very painful condition for my father.
Name :: mike
Story :: In Feburary 05 I found out that I have Bladder Cancer. I went thru feb.
to july in a chemo therapy program..On August 2nd I went in for a total
cystecomy and Indiana pouch diversion.
Had complications because of alcohol with draws. september 9th got
infection-skin burning up-stomach bloating.Back in ICU
due to infections(sjs).Believed to be contributed to Van Coymycin.. Put on a
respirator.. On Sept 20th I had Respitory failure and Aspiration Pneumonia. Then
I was failing ventilatory wean. They Proceeded with Tracheostomy.Finally started
to do better and November 22nd they sent me to a nursing/rehab center. I Don't
remember much of the hospital I was unconcious. My Family thought in march they
would have to make funeral arrangements.
I had a bad back before all this started, but lying in hospital and nursing
home did't help my back any.After 6months plus,I was finally had all the tubes
and trach taken out and able to walk out well enough to go back home.
As of today, I still have pulmanory problems, swallowing problems& sores on
lower legs. had eyes checked and no problems there.
I Will Say that I had very good and caring Doctors at Lutherans.
Mike
Name :: Steve & Dawn Johnson
Email_address :: ok_blessed@yahoo.com
Story :: Greetings to All,
One in 93, our daughter awoke earlier than normal and came and got in bed with
us. Not feeling good, she snuggled in between us while we all dozed for awhile
longer. When we awoke, we noticed that small little blister like bumps had
developed in the area of her face, particularely the mouth area. These spread
quickly over the next couple of hours which had us on an emergency visit to our
pediatrician and then on to the ER.
Our first original hospital stay resulted in a no diagnosis type of situation.
We transferred to Childrens Hospital of OKC who did diagnose SJS within a short
amount of time. Our daughters condition was extreme, with critical sloughing
of her skin layers, both external and internal. Our hospital stay approached 3
weeks with time spent in the Intensive Care Unit.
We soon discovered that the culprit was Sulpha, an antibiotic which she was
taking on a daily basis to thwart an ear infection.
Fast Forward to Today... .. our 16 year old daughter is recuperating from tear
duct enhancement surgery on this very day. It seems that during the healing
process from SJS, her tear ducts scarred over which blocked the normal flow of
tears flow from internal to ouside on her face. Whenever her eyes would
water, the tears would have to drain down her cheeks, which meant that she was
constantly wiping her eyes and face. .... As far as the sloughing of the
skin, which was so severe that she had to be treated in the burn unit, we have
no lasting reminders . The tear ducts are about the last enemy that we're
still battling..
If you are going through SJS at this time, dont despair but have hope. Our
episode with SJS was severe, so much so that the hospital staff used our
daughter, (with our permission), as a case study. We quickly became
proficient in the aid of our daughter while living in the hospital room with her
and also enduring student doctor groups at different times. We figured that
the doctors in training would benefit from our experience and that might in
turn help another family down the road.
Hats off to all of our medical professionals who patiently care for our sick.
We're a family of Christian faith who believe that medical professionals are
indeed a part of God's plan of healing.
Name :: SHARON TACKETT
Email_address :: SKTACKETT3758@YAHOO.COM
Story :: HI MY NAME IS SHARON TACKETT AND MY SISTER PAM DICK HAS SJS. SHE WENT
TO THE BUCYRUS HOSPITAL IN OHIO WITH A RASH AND A FEVER. THEY TOLD HER SHE HAD
THE MEASLES, AND GAVE HER MOTRIN AND AN ANTIBIOTIC AND SENT HER HOME. SHE ENDED
UP IN THE ER 2 MORE TIMES, FINALLY THEY TOLD SHE DID NOT HAVE THE MEASLES AND
THEY DIDN'T KNOW WHAT IT WAS. SHE THEN WENT TO HER FAMILY DOCTOR AND SHE SENT
HER TO NEWARK, OHIO TO A DERMATOLOGIST, THEY SENT HER TO OSU HOSPITAL IN
COLUMBUS, OHIO RIGHT AWAY. THAT IS WHEN THEY DIAGNOSED HER WITH STEVEN JOHNSONS
SYNDROME. THEY FILLED HER FULL OF FLUID AND ANTIBIOTIC'S, KEPT HER IN THE
HOSPITAL FOR 2 DAYS AND SENT HER HOME BECAUSE THEY WERE AFRAID SHE WOULD GET AN
INFECTION AND MAKE HER CONDITION WORSE. SO SHE WENT HOME AND A FEW DAYS LATER
MY MOM AND DAD WENT TO SEE HER AND SHE WAS IN BAD SHAPE, HER FEET WERE VERY
SWOLLEN, HANDS, ARMS,AND FACE, AND THE WHITE OF HER EYES WERE RED, SHE ALSO
WOULD HAVE A HARD TIME BREATHING AT TIMES AND SHE WAS STILL HAVING FEVERS.
THE NEXT DAY ME AND MY DAD TOOK HER BACK TO NEWARK AND THEY PUT HER IN OSU
HOSPITAL AGAIN BECAUSE THEY THOUGHT SHE MIGHT HAVE TOXIC SHOCK SYNDROME.
BECAUSE OF THE CONSTANT FEVERS WHERE SHE WOULD SHAKE ALL OVER. AFTER THE BLOOD
CULTURES THEY FOUND OUT SHE DID NOT HAVE TOXIC SHOCK WHICH I THANK GOD FOR, SHE
DIDN'T NEED ANYTHING ELSE. THEY PUT HER ON WATER PILLS AND ANTIBIOTICS AGAIN TO
GET SOME OF THE WATER OFF THAT STAY ON FROM THE FIRST STAY IN THE HOSPITAL,
WHERE THEY PUMPED HER FULL OF FLUIDS TO KEEP HER SKIN HYDRATED. SHE IS HOME NOW
AND FEELING SOME BETTER EVERYDAY, SHE STILL HAS SOME SWELLING AND HER SKIN IS
PEELING. SHE GETS TIRED VERY EASY AND SHE CAN'T GO BACK TO WORK TILL WE DON'T
KNOW WHEN. THEY ALSO TOLD HER THAT SHE SHOULD NOT GO OUT AROUND PEOPLE BECAUSE
OF INFECTIONS. WE STILL DON'T KNOW THE LONG TERM EFFECTS THIS MIGHT HAVE ON
HER, BUT I PRAY TO GOD SHE DOEN'T HAVE ANY. THE DERMATOLOGIST SAID SHE HAD A
MILD CASE SO MAYBE SHE WON'T HAVE ANY.
THANK YOU,
AND I HOPE THIS STORY HELPS SOMEONE BECAUSE THIS DIEASE REALLY NEEDS TO BE KNOWN
AND I DID CALL THE BUCYRUS HOSPITAL AND TOLD THEM WHAT SHE HAD SO THEY CAN BE
AWARE OF THIS IN THE FUTURE.
SHARON TACKETT
Name :: John
Story :: I've survived 4 years after having TENs from Zithromycin (Nov 02).
I had surgery by Dr. Scheffer Tseng in Miami to release the symblepharons in my
eyes, he reconstructed my fornix's, scraped my lacrimal glands, and applied
Mitomycin C and Amniotic membranes approximately 18 months after I had TENs.
My tears dried up after the surgery - even worse than before it. But within the
last year or so, they have started again - I attribute this to the lessening of
the scar tissue on my lacrimal glands by Dr. Tseng.
I also experience increased tear flow when taking the anti-depressant Zoloft.
When I stop taking it my eyes really dry out.
I've used cyclosporin drops, blood serum eye drops, numerous steroids and
antibiotics.
I now wear contact lenses - even though it's not considered good for me by most
of the doctors. This is because I nearly lost my right eye to an ulcer - and
they were forced to use a bandage lens to help it heal.
My eyes are a constant problem and there is always something going on with them.
Now it's an allergic reaction in my lids - treated with steroids - again! I
have a corneal specialist as my primary care physician!
I'm having surgery to correct my "droopy lids" on October 6th.
I'm convinced that, eventually, I'll lose my sight - but I'll deal with that
when it happens!
I have brittle partial nails and they'll never get any better. There are "age
spots" all over my body that have to be frozen off with liquid nitrogen.
My immune system is shot - I catch a cold if I go to the mall. And I never give
it to my wife or kids! I'm always tired and depressed (not just the TENs).
But I'm alive, and I can still do most things that I could before I got it. FYI
- I was a paratrooper in the US Army when I got it. I'm retired now and am
getting along quite well on my pension and disability.
Name :: Zoe Lorca
Email_address :: lorcaz@michigan.gov
Story :: SJS - A year later...
Well, I posted a little over a year ago when I first had full blown SJS and was
in physical, mental and spiritual agony. I wished I had died, the pain of the
burns, the pain of realizing it was preventable and feeling totally alone was
overwhelming.
With the help of this website, reading these stories, my loving husband, basset
hound and friends I kept going. So where am I now? Now I am preparing for the
Detroit half marathon competitive race walk and already have a 10 mile race walk
and a triathalon under my belt. I was able to return to competitive skiing and
took up competitive swimming to try and deal with all the weight I gained from
being on more steriods than a pro baseball team.
My eyes are still light sensitive, I have permanent scars on my body (where the
pigment is completely different), and I have to wear sunglasses almost all the
time, but I'm out there and I'm doing it. I just want to say thanks and to all,
you can do it too. We are all a lot tougher than we think.
Thank You
Zoe Lorca
Name :: Helen Allen
Email_address :: helenjallen@hotmail.co.uk
Story :: My name is Helen Allen, I live in the UK. I had stevens johnsons
syndrome when I was eight. It was a very horrific and unforgettable time for me
and my parents. I was in hospital for three weeks back in 1991 and the doctors
didnt know what they were dealing with until around the second week. They told
my parents I was sure to die. My eyes were fused shut and my body was covered in
blisters which later turned to scabs. I had to be held down by two nurses while
a caffeta was inserted inside me, I screamed and kicked and one of the nurses
fell against my face and knocked a large area of scabs off my face leaving my
cheeks scarred afterwards. A doctor tried to force my eyelids open with his
fingers while nurses held me down and my I remember this being one of the most
physically painful times for me, my mother screamed for him to stop and the
doctor then decided to perform an operation to cut my eye lids open. This is the
operation that has left me with the problems I face today with my eyes.
Every day I am in the most unbearable pain. I have been in pain for 15 years and
over the years the pain has worsened. In the beginning, I was seen at Oxford
Hospital and then I was transferred to Moorfields eye hospital in London.
Several operations were tried on my eyes. Each not actually making my eyes any
better but in fact making them worse. I had laser therapy, and a freezing
treatment.
Where my eyes were cut open, they have scarred on my eyelids and I now have a
condition where my eyes are yurning inwards due to the scarring and as a result
I have eye lashed and fine hairs that grow directly into my eyes. My eyes are
extremely dry and my mucus membranes are damaged and my oil ducts are blocked.
The pain I have to endure every day is agonising. When a local doctor heard
about the freezing treatment I was receiving in London, he offered me the same
treatment but on my doorstep in my home town, so I was transferred to this
doctor who repeatedly performed the freezing treatment to try and stop the eye
lashes and hairs from growing into my eye. Unfortunately, even though I was
having near-on three operations a year, nothing was stopping the growth and the
lashed have now started to grow in larger numbers.
The eye doctor told me that whenever the eye lashes were getting too long and
painful for me to just go to his surgery and he would see me straight away with
no appointment needed. But then this doctor retired and I was passed on to a
different doctor. He looked at my condition and told me that the best operation
would be (I cant remember the name of it) but its where they split your bottom
eye lids in half and slide them so that the lid has been pulled away from the
eye. The idea was to replace the eye lid tissue with placenta. The operation was
to be performed by two surgeons who both assured me it would be the most
beneficial and effective for my condition. I was very concerned about the
appearance it would leave my eyes with as I was bullied very badly at school
because of my scarred cheeks and red eyes and I had finally got my confidence
back over the years with my scars fading slightly. Both doctors reasurred me it
would not make me look any different. This operation was the biggest I had ever
encountered. It took plave two years ago at which point, after so many years of
pain, I was desperate for some ease and decided to take it. I booked the time
off work and was told that I would probably need two weeks recovery time. It was
one week before the operation was due that I found out I was pregnant. Me and my
fiance were very happy but the operation was so important to me-offering me a
stop to my pain. The only other operation date they could have offered me was in
6 months time which by then I would have been heavily pregnant. So my fiance and
I both agreed that it was for the best I would have the operation. It went
successfully and thankfully, my pregnancy was not unaffected. I was so heavily
dosed on pain killers when I woke up that I was over the moon because for the
first time in what seemed like forever, I could look around the room with ease
and not be affected by the bright lights and feel stabbing like sensations in my
eyes. I was so happy. But getting home was a different matter. I was home for
three days when the anesthetic wore off. My eyelids had self dissolving stitches
in them and they caused me horrific pain. But more worse than that, the
eyelashes continued to prick into my eyes and it was absolutely heart breaking.
I wasnt due to be seen by the doctors until another two weeks but I was in so
much pain it was inbearable and no pain killer could stop it. My Dad tried
ringing the hospital and spoke to the secretaries of the doctors but they
refused to see me and offered me an appointment 7 days away instead of 14.
Although this was better, I was still in agonizing pain with the stitches which
were not disolving and the plastic plates which were pushing against my eye
making it very uncomfortable for me, but once agin above all, what hurt the most
was that even through all the pain I had endured, my eye lashes were still
sticking in my eyes and on top of that, I was pregnant. My Dad fought on the
phone with the secretaries but not even between two doctors-could they manage to
see me sooner. My Dad went through to the complaints dept and made a formal
complaint and told the dept that he will be bringing his daughter up there and
we will be sitting in the waiting room until one of the doctors see me. It was
disgusting that the two men who had performed such a scary operation on me were
refusuing to make room in their schedules to see me. I cried in pain for most of
the remaining week. I couldnt touch my eyelids because they were sore from the
operation and I was desperate to remove the lashes myself as I had always
managed to remove a few of the longer hairs myself. So, in desperation, I got my
tweezers and started to pull what I thought was one of the offending lashes but
as I felt the immense pain I realised that it was not a lash but one of the un
dissolved stitches and I screamed in pain. My fiance and father were so
horrified by this that they insisted on taking me up to the casualty dept in the
hospital but I just wanted to rest and I really wasnt into a 4 hour wait in my
condition. After a grueling week I saw one of the doctors who apologised for not
seeing me, it turned out that one of the doctors had gone on holiday and the
other had been left with all his patients to see. My Dad wasnt happy at all. The
doctor looked at my eyes and said he was very impressed and that my eyes were
looking great. I rtold him about the lashes still growning inwards and he said
it would take time for my eyes to heal properly and that I should wait three
months. He pulled out the un dissolved stitches which was almost unbearable and
then he removed the offending eye lashes. I returned back to the hospital about
two weeks laterto see the other doctor. I was in a lot of pain and needed my
eyes to be looked at. I couldnt put my finger on what was causing the pain and
couldnt describe it-it was a lot different to the usual pain I felt. The doctor
had a look and my family and I were disgusted to find that one of the plastic
plates, that had been inserted into my eyelids to stop the stitches from
scratching my eye lid had accidentally been left in there.
Later we learned that the two doctors each performed a different operation on
each eye to see what was more effective. I felt like a gunea pig. Stevens
Johnsons Syndrome is not very popular in the UK and it seemed as though I have
been through 15 years of experiment operations. I remember the day of my first
scan. I was seeing one of the eye doctors-checking up on the healing of my eyes
and I told the doctor that I had my first pregnancy scan later that day and that
I would give anything to be able to look up at the screen and see my baby for
the first time and not have to struggle with my eyes. The doctor understood and
althougg he shouldnt have, he gave me a numbing eye drop just that one time.
My fiance and I attended the first scan later that dayand I am so glad I was
able to look up at the screen because it was revealed that I was carrying
twins!!!! We were both shocked and overwhelmed and I remember the look of
disbelief on my fiances face. I was delighted, scared, excited all at the same
time. My family couldnt believe I was having twins either!
So for a while my attention was not so much on my eyes, I just got one with the
pain as I had done for the previous 13 years of my life, I was more focused on
my two precious bundles of joy. I had no problems with my pregnancy, but towards
the last two months of my pregnancy, I had started to develop a syst on my right
top eyelid. I had often got systs when I was repeatedly having freezing
treatment on my eyelids so I ignored it.
On October 25th 2004, I gave birth to two beautiful baby boys. It was one of
the greatest moments in my life! Lots of pictures were taken and straight after
the birth I was so happy to be able to look at the camera as we held our babies
in our arms. It wasnt until I looked in the mirror some time after that I
noticed the size of the syst. It was huge. Even the doctors and mid-wives were
mentioning it, thinking it was something to do with pushing too hard during the
birth! After I saw the size of the syst in the mirror I was suddenly not so
willing to have my picture taken. The syst was so big that it made me right eye
droop and I looked awful. I look back at those pictures and I am so angry
because there are hardly any of me holding my twins as newborns. I just didnt
want my babies to grow up and remember their mum like that in those pictures!
When the twins were three months old, I was booked in to have the syst removed
under a local anesthetic. I was so scared about this operation. It brought back
a horrific memory of the time I had a local anesthetic at Oxford when I was 16
years old. I had an injection in each eye lid to numb it and it was the worst
pain I had EVER encountered in my whole experience of stevens johnsons. It
over-ruled everthing I had ever been through. I cried my eyes out on the
operating table and when the injections had been administered I could still feel
what they were doing to my eyes. One nurse walked out as she had started to cry
and the doctor told me that I could either put up with feeling what they were
doing to me (freezing my eyelids) or have a 5th injection. I said that Id rather
put up with it, so he continued but it was just too much so they ended up
putting in a 5th injection into my eye. I was crying so much and was being told
repeatedly to open my eyes and to keep them open that I had a panic attack and
the operation was called short. And here I was 5 years later, about to go
through it all again-just for a syst that wouldnt stop growing. As soon as I got
there I had began shaking. I told the doctor that I didnt want any injections,
that he was to go ahead and remove the syst without and anesthetic. He looked at
me in disbelief and told me that this was a very painful procedure and that
injections were for the best. I begged with him that I just didnt want to go
through that amount of pain again and I assured him that I would be okay. He
checked with another doctor and it was okay to be gone through with. As I lay on
the operating table a woman was asked to come in and hold my hand as I was on my
own. She started asking about my twins to take my mind off the doctors bustling
around me getting ready. I happily laid there and told her their names and birth
weights and how there are no twins in our immediate families. I was when I heard
the doctor ask to be passed the knife that I went very stiff and the woman
squeezed my hand and told me everything was going to be alright. Inside, I felt
myself returning to that horrible place, being 8 years old and having things
done to me that I was unable to see but only feel. My right eye lid was turned
inside out and I started to shake. The doctor asked me one last time if I
wasnted the injections and the memory of the pain of those last injections
washed over me like a tidal wave and I nodded my head no. He started to cut the
inside of my eye lid with the knife and the womans grip on my hand loosened.
Someone asked he if she was alright and she took a while to answer but said yes
and squeezed back onto my hand. I had made a very big mistake. The pain I was
feeling was back breaking, but I sucked my lips together and refused to cry..
All I kept thinking about was holding my twins in my arms and having wonderful
pictures taken with them with no horrible syst. I concentrated so deeply on my
twins that I was able to bear the pain and ignored the blood tricking down my
eye. But the syst was not breaking and a problem arose. Suddenly I heard a
familiar voice enter the room. It was one of the doctors who had performed the
last operation. He saw what was happening and the other doctor explained that he
was performing the operation with no anesthetic. The doctor raised his voice and
came close to me. I had both eyes shut and was in too much pain to open them.
"What are you doing?" he asked in a loud voice "You want no anesthetic? This is
bloody painful you know!" I said "YES i KNOW" in a very loud voice. The doctor
said he was going to give me a little injection but I tried to sit up and was
quickly held down bu the woman holding my hand. "No please! " I begged "I had a
really bad experience and I nearly fainted, please I am okay" The doctor told me
that it wasnt very nice for the doctor having to perform the operation. But I
really couldnt put up with those injections and to this day I am so glad I didnt
have them. I know they would have caused me un forgettable pain. So the doctor
took over and began squeezing the syst with his fingers. It was almost
unbearabloe. I kept crying out in pain. I used this oppurtunity to point out in
a loud voice that THIS IS WHY I CANT HAVE LOCAL OPERATIONS ON MY EYES. I had
previously requested that the operation was to be done under general anesthetic
but the doctors refused it as it was such a minor op. They did all they could
with me laying there and had managed to reduce the size of the syst but not
remove it. The doctor said that from now on I was to have only general
anesthetic as my condition was special.
After that, getting to see the doctors became harder and harder. One of the
doctors moved to another hospital and the other doctor is rarely there. I have
to see the eye doc on call in the eye ward at the hospital if I need eye lashed
taken out. No future appointments have been offered to me. My Father and I
asked the eye doctor to refer me BACK to Moorfields eye hospital in London. He
said he would write to us and we havent heard from him in 9 months. I have an
apointment with yet again a different doctor in two months time and I remove any
eye lashes I am able to myself.
I hardly ever go out. I cant learn to drive because of my problem with looking
up and I am being treated for depression. I have good days and bad days in terms
of my eyes but for the last year, they have been mainly bad. I have cried twice
while writing this story and I am not ashamed to say that I am scared. I am 23
and already have wrinkles appearing on my eyelids which look scarred and worn.
My eyes look tired and I am so scared that they will get more dry and turn
inwards even more and that the lashed will continue to grown in even larger
numbers. I am scared to accept anymore operations as quite frankly, I have been
though enough in this life time. This story is just a brief glimpse of what I
have been through. I am just so relieved to have found a website dedicated to
the condition I had as a child. I dont feel so alone and In have shed a few
tears reading some of your own stories. I can only pray that something will help
me with my eyes. My wedding day was a miracle as my eyes managed to stay clear
during the ceremony and I ws able to look up into my husbands eyes during our
vowels but when it got to the reception they were red raw, but it was okay I
managed to get the church pictures I wanted. Just of my and my husband and my
eyes looking normal for my special day.
I heard about some treatment and operations offered in the USA. I dont quite
know how to go about seeking help from there. Is it possible that I could have
treatment from another country? How could I get seen? And would it cost a lot of
money? Does anyone know or can anyone help? I just want to try all I can to put
an end to the pain and suffering I endure with my eyes. before I miss out on too
much of both my twins childhood and of my young years. Please email me with
anything you may have which will help.
Thank you for reading my story. I hope to write a book one day which will
portray my feelings and memories of Stevens Johnsons Syndrome and also inform a
country who doenst really know a lot about it. The children at my school
certainly didnt.
Thank you
Name :: vanessa
Email_address = apedosme2@yahoo.com
Story :: my name is vanessa, at age 17 I had a sever allergic reaction and had to
be admitted to the hospital. when I went in to the emergency room the doctors
were dumbfounded and didnt know what to do with me. my body was already begining
to be covered with red sores which later turned to blisters, I could hardly
speak or swallow. The doctors spoke of putting me in quarintine because they
didnt know what else to do. it took 3 days for a team of 4 doctors to tell me
what I had, SJS. they themselve told me very little about what I had and said
that it was very rare and none of them had ever seen this before. I was in the
hospital for 13 days as a burn paitient. From what I have read and been told
since then from my doctors is that I had a mild case you could say. I still have
faint scares from some of the sore and a few dark spots. I am sensitive to
bright lights and whenever I have a faint itch or any kind of redness im
reminded of what I went through. I remember my friends and family coming to
visit me and seeing them look at me the way they did scared so much. looking in
the mirror and not being able to recognize my own face. I missed my senior prom
because I was so self concious of the way my body looked. I think its horrible
that people have to search so hard to find a few answers and some information
about whats happening to them.
Name :: carol weems
Story :: Hello everyone, It is going on two years since the death of my
mother Eugenia Clark. It seems as if it was yesterday though. My family
will never forget the agony that she had to go through. She had to lay
in a hospital room for one week with no skin on her back and I remember
her telling me that her feet felt as though she had them in coals of
fire. She was treated with A&D oitment and baby powder. That was until
she dehydrated so badly that they had to rush her into ICU.Then it was to
late. She had an allergic reaction to some new RA medication. Her RA
doctor never bothered to tell her that this could happen. The story is to
graphic to tell of everything that happened to her. My heart goes out
to anyone who has are had to watch someone they love go through it. She
was not treated right from the very beginning. She should had been put
in a burn unit right away. Sure she was treated with as much care as
she could get once in ICU.Then it was too late. They couldn't even
transfer her to a burn unit. We have tried all we could to get someone to
take our case because of the neglect and the mistreatment that she
received. But they said they could not prove that the right treatment would
have made a difference. She wasn't even given that chance. We need to
tell people what medication can do to them. Our family had no clue what
sjs was. To tell you the truth my feeling are her doctors didn't know
much about it themselves. She is missed everyday and if she would have
known that this medicene would have such terriable side effects she would
had never taken it. She trusted her RA doctor she had seen him for
years. When he learned of her hospitalization and her syptoms he knew right
away what it was and said she needs to be in ICU. TOO LATE! He retired
right after that. Thanks to my Lord and Savior Jesus Christ my family
got through it. I know where she is and how happy and well she is now. I
also know that I will see her again. Thank you for this site because
talking about it does help so much. Carol
Name :: carol burns
Email_address :: carolanne5816@gmail.com
Story :: I am one of the lucky ones, I do not remember too much about my SJS.
The things I remember are being in an isolation room, it was completely made of
glass and let a lot of light in so I kept my eyes shut most of the time.
I was 4 years old and I was given phenobarbital for a bad case of exzema, within
24 hours I was in a coma. I lost all my hair,nails, and my right eye and my
left had no tear duct and teeth and what skin I had left was severly damaged.
I spent 6 months in the hospital and then the rest of childhood in and out of
hospitals because of no immunne system. I have had multiple surgeries on my
eyes, totalling 30.
I am now 48 years old and apart from the obvious eye sight problems and
allergies to drugs and products I have led a very productive life and am married
to a very loving handsome man who does not see my eyes and scarred skin.
I think that my parents suffered way more than I did, they felt a lot of guilt
and my brothers didn't get as much attention as they should have.
Name :: Barbara Jackson
Email_address :: bjjjzjcj@sbcglobal.net
Story :: Hi all,
This is going to be more of a question, than a story. Has anyone heard if there
is any information out there regarding children of surviving SJS victims, if
they might be more susecptible to getting SJS themselves?
