Read SJS/TEN Stories Close Window
Read stories results: Found 180 matches out of 180 records.
[Search story]


ID: 100073 Time/Date: 05:17:52 PM PST/ 01-06-2010
Name: Becki Conway
Email Address: bccnw@hotmail.com
Story: It all started when I went to talk to a fellow coworker, a doctor that I worked with regarding mood swings that I experience. He prescribed me Lamectil (sp) and said you will feel a diffrence right away. So I started taking it as prescribed. Two weeks went by, I never felt better. Then I started having chest pains. They were like contractions they come and the went for a day and a half. I didn't think anything of it at the time because the pain was not radiating down my arm. The second day I woke in the morning and my eyes were crusted shut. I had a cough and a tickle in the throat. I was tired but did not think nothing much of it because I have 4 children, which 2 of them are 2 year old twins. I was always tired.. Got dressed that afternoon to go to work early and was going to have the dr take a look at my eyes and be on my way to work. Dr was too worried about my chest pains so she did a ekg and chest x ray. Which was normal, but transfered me to the hospital via ambulance..arrive at the hospital and later discharged. Getting my dc papers and
then changing into my clothes I notice a red blister rash that covered my trunk, face and neck. This was not there when the rn give me my dc papers.. A sudden onset. Doctors were notified and a shot of benadryl was given and home I went.
At 4 am I awoke with blistery leasons in my mouth. Took advil for the pain and awoke at 7am with leasons moving to my throat. Back to urgent care where I was given inject of steriods (Solamedrol) and was told to stop taking the lamectil that the dr was sure I had sjs. Home I went again. Very fatigue at this time. I take a nap waking up in much pain as the leasons I could feel were making their way down my throat to the esophagus. Back to er when then I was admitted.
For 10 days the dr did not know what to do with me. Doctors and students come in to take pics as they have never seen sjs before. After 10 days I was transfered to a icu trama burn unit in another hospital. Where they then started the IVIG, feeding tube for nutrition, respitory, gyn, opthamology and dermatology was called in.
I have had 2 surgeries on my eyes as my corneas had blistered and peeled away. I suffer from stem cell defisiency, dry eye syndrome and my vison went from 20/20 to sometimes leaglly blind and sometimes 20/60. Just depends on how much I work my eyes.
My internal organs, such as my lungs and bladder were also affected. My lungs burnt and schluft. My esophagus was swelling closed. Was to be the size of a quarter and was the size of a straw.
My tongue burnt. Taste buds, roof of my mouth and gums all burnt Everything I ate for 2 months tast like shortning..I have a chronic cough. I have had no primary care doctor to follow up with,. I do see a cornea specialist. I am being fitted for a special contact lens that I suppose to defuse the light from hitting my scars on my eyes. Thus helping with improvement of sight and dry eyes.
My tear glands were destroyed during all this and my tear ducts were plugged with scar tissue.
I also suffered with leasons in the genital areas and rectom. Lost over half of my hair and finger nails lifting.off my nail beds, My body burnt inside and out over 50% of my body.
I am thankful to be alive. I love my husband and my sister for all the support they show me during this time. I would like to keep in contact with those who have suffered from sjs/tens. It is amazing how diffrent this disease affects each and everyone of us..Best wishes to all of you and GOD bless you for having to go thru this horribe event.
Add Email to Story: Yes

ID: 100072 Time/Date: 07:04:30 AM PST/ 12-14-2009
Name: Jessica
Email Address: EmailAddress@notprovided.com
Story: In January of 1995, I went to a local clinic in Nashville that was open on a Sunday. I had a sinus infection and went in to get an antibiotic. I was an active college senior and didn't have time for the sinus infection. I was given a sulfa drug that I believe was similar to amoxicilin. Within the next few days, I began to develop a fever and my glands became the size of softballs in my neck. I went back to the clinic and was told to continue taking the medication as I was going to get 'worse before I got better.' I also went to my university clinic and was sent home. On the last day of my 10 day prescription, I developed a rash over my entire body and spiked a fever. I was given a tube of benadryl by my university clinic and sent home. Luckily, my mother, a nurse in Atlanta at the time, had me get on a plane to go to her. By the time I arrived, less than 3 hours later, I was unable to stand and my fever was so high you could feel the heat through my clothing. My mother took me directly to the hospital to a doctor she knew. I was given clinical doses of antibiotics and released to my mother's care. My entire body blistered on the inside and out. All of my skin then fell off as did my toenails and fingernails. My skin was new and sensitive like a burn victims. I could not hold a pen for several weeks as my hands were so sensitive. My mother soaked me in oatmeal baths for days and kept me hydrated as I couldn't swallow due to the internal blisters. I feel incredibly lucky now knowing how much worse it could have been. I now wear medical alert bracelets at all times and tell people that I work with or travel with about my condition in case of emergency. Thankfully, my eyesight was not effected and I was able to make up my school work and still graduated from college on time.
Add Email to Story: No

ID: 100071 Time/Date: 04:33:17 AM PST/ 12-06-2009
Name: Karen
Email Address: kareno@regionten.org
Story: My story is about my Mom. This September she underwent knee surgery to remove a knee prosthesis that was infected. The prosthesis was removed and a knee spacer was put in that was filled with Vancomycin pellets to help combat the infection. She was discharged to home with IV Vancomycin and Cefepime for 6 weeks. After 2 and a half weeks she developed "Red Man" syndrome. After that she was in and out of the local emergency room 3 to 4 times before she was finally transferred to the ICU at Shands hospital in Gainesville. The doctors there did not believe she would make it through that first night for her reaction had progressed to TENs and she had over 98% skin involvement. She is 73 years old and two weeks before her surgery she had won first place in a horse show competition!

It is now four weeks later and she is still struggling to recover. We have almost lost her 3 or 4 times. She had a serious staph infection, pneoumonia, and most recently a blockage developed in her esophagus related to a loose piece of skin in her mouth that blocked her respirator. She has been medically sedated through most of this period and when she is alert she is pretty anxious as you can imagine. Our family is cautiously optimistic as her skin has healed over 65% of her body. Though we are horrified at what she has been through and hope that if she survives she will be able to live contently for the last years of her life.

I go to this website often for comfort, knowledge and seeing that there are other families out there going through this horrific experience.
Add Email to Story: Yes

ID: 100070 Time/Date: 06:28:24 AM PST/ 11-21-2009
Name: trish_fuller@hotmail.com
Email Address: EmailAddress@notprovided.com
Story: A Psychopharmacologist at MGH Boston was SO THrilled to be in a position to prescribe to me this "Wonder Drug," Lamictal, aka: Lamotrigine. She said alll of her patients were tolerating the drug very well, with virtually no side effects. She Started me out on a very low dose, which was to be incrementally increased weekly. She mentioned Stevens-Johnson Syndrome, that it was potentially fatal. And the likelihood of my contracting it was akin to being struck by lightning AND being bitten by a shark the same day.

So, I guess I felt pretty safe taking the medication. BIG MISTAKE!!

Sitting outside in the brilliant sunshine on the deck of the new Island Home ferry, after about ten minutes, headed for the Oak Bluffs dock, I looked down to see my arms, neck, and shoulders erupting in blisters.And I felt warmer than the weather would dictate.

Flying into the nearest restroom, I got the full picture; the blisters had covered my face as well. Knowing I am part Wampanoag, and that I don't suffer these merciless "tourist burns," I immediately called MGH. I was instructed not to get off the ferry, but to turn tail and head straight back to Boston, and MGH.

It seems that I had both won the lottery and gotten that shark bite: I had the dreaded Stevens-Johnson syndrome.

After a day and a half of injesting every antihistamine and antiinflammatory, as well as enduring a 103 fever, it was decided by the med staff that I might, in fact, live to see another day. The blisters itched like hell, but hey, I could have been dead in a few hours from this syndrome!

I suspect the number of cases has been manipulated (downward). Noone should take this medication confidently that the side effects are SO rare that they have nothing to worry about. And I have swum with sharks. A thorough investigation is in order.




Add Email to Story: No

ID: 100069 Time/Date: 03:24:12 PM PST/ 11-15-2009
Name: Suzanne Bell
Email Address: sebell1862@aol.com
Story: On Thursday, October 8, 2009, my 17 year old daughter, Karyl, began complaining of itchy eyes while at school. She hadn’t taken any over the counter or prescription medication or had worn or eaten anything differently. Upon coming home that night her eyes were swollen but we thought it could have been due to the contacts. That night, she awoke not feeling well and by morning her face around her eyes and mouth was swollen.
I took her to the doctor and they treated her with Benedryl and antibiotics but she began to run a high fever and a rash began to develop. We were sent home and later that evening, her tongue began to swell. Fearing where this was leading we took her to the emergency room where she was immediately diagnosed with SJS. She was admitted to the pediatrics unit and kept in isolation until they could determine what had caused this reaction. All of her medical tests came back negative. There was no reason for this. We went through every possible allergen and couldn’t come up with any ideas except something at school. The school was dealing with a severe mold issue and was in the process of removing materials that tested positive for all sorts of spore types. They were also spraying chemicals within the classroom areas to disinfect the area of the school. The doctors could only tell me that in their opinion, it was a contact allergen that she had been exposed to within four hours of onset.
Needless to say, I spent 17 days in the hospital with my daughter. The blistering covered her body especially her face and chest. Her body, arms and legs were less affected. Her eyes were severely affected with scratches to her corneas and blistering as well as blistering to her mouth and her lips. The eye specialists and cornea specialists were in to see her at least twice a day during our stay constantly working on her eyes and putting drops in.
Although her skin is healed, there is discoloration. She is very light sensitive and must wear sunglasses inside and outside. She still tires very easy and struggles to use her eyesight. She can see however it is blurry and we are constantly putting drops in her eyes to keep them hydrated. We have follow ups with the eye specialist and everything else we’ve been told will take time.
Add Email to Story: Yes

ID: 100068 Time/Date: 07:41:31 PM PST/ 11-12-2009
Name: Evie
Email Address: EmailAddress@notprovided.com
Story: I was diagnosed with SJS June 25 2009 after having a reaction from Lamictal. I had no idea what was happening to my body because i was told I may get a rash that looked like a sunburn, instead i was covered in blisters. I wasnt put in the hospital right away but instead given oral steroids. Three days later the blisters had traveled down my esophagus and i couldnt swallow. I was treated first in Gloversville and then transferred to Albany Med where i stayed in ICU for 8 days. After getting out of the hospital i had another reaction from the Nexium they had me on. It was probably one of the hardest, worst experiences of my life and i'm glad i made it through ok. I now try to tell everyone i can that this kind of thing happens. I had no idea what SJS was or heard of it until i ended up with it. Hopefully someday they can find a cure.
Add Email to Story: No

ID: 100065 Time/Date: 06:42:30 PM PDT/ 10-14-2009
Name: Pamela Hudson
Email Address: EmailAddress@notprovided.com
Story: I am 37 years old, I have multiple myeloma(cancer of the bone marrow), and kidney failure. I recently was diagnosed with sjs and this was the first time I had ever heard of it. One Friday I was at home with my two children, ages 8 and ten, when all of a sudden my mouth and lips began to feel very irritated. I really did'nt think much of it that night I thought it was somthing that I had eaten. The next morning when I woke up I was swollen and had red spots all over my body which progressed rapidly over the day,I also began to run a fever. The next day I decided to go to the ER to find out what was going on with my body. While in the ER I was told that I had an drug reaction and was sent home with a cortisteriod. I stayed home for a week taking this cortisteriod that had been prescribed to me and hoping this would all be over soon, but it only got worse. That following weekend I noticed my skin beagan to just peel off. I had made my mind up then that I was not going to just sit around and hope anymore, It was time for my Dr. to see what I looked like. Monday morning instead of calling my doctor I decided to jsut show up and demand that he get me the treatment that I needed. I was sent to see a dermatologist for his opinion of whether or not it was sjs and it was. That day I was admitted into the hospital (not the burn unit or icu) for treatment, there I stayed for three days. Since then my skin has really improved, however I do have some permament scarring on my body. I though my case was not as severe as others I have been told and read about, I do realize that sjs is no laughing matter. I pray for all that has gone or is going through this.
Add Email to Story: No

ID: 100064 Time/Date: 01:25:41 PM PDT/ 10-11-2009
Name: Vincent Adude Onyokor
Email Address: vincentadude@yahoo.com
Story: In January 2009, my daughter Ivana Kotilda Nalusiba (aged 4) fell sick and was taken to Savannah Sunrise Clinics, Inc in Kampala-Uganda for treatment. She was said to have an infection and was treated and we returned home. A day later, the child was not gettimg any better and she developed high fever, with red eyes, loss of appetite, with some rush on her face.

We returned her to the sme clinic and she was diagnosed to have chicken pox and given an antibiotic (Zinat). A day later the child developed multiple rushes with sores in the whole mucus membrane and we rushed her to Kololo Hospital in Kampala.

At Kololo Hospital, alot of tests were carried out which proved negative. Later a consultant confirmed that my daughter suffered from a drug reaction and had developed full blown steven johnson syndrome (SJS). Ofcourse we did not know what it was and what to expect.

For six weeks, the child fed through a tube nd survived on only fluids. It was a terrible experience that my wife and family had to go through. The medical expenses were just unbearable and it was by God's grace that she managed to survive. However she recovered with multiple scars which have seriously affected her skin. She had a lot of complications when she came out of hospital, with difficulties in passing out urine and stool. She had to undergo another operation to have the stool passage corrected.

To date our daughter is looking so terrible and we have been emotionally affected as parents and the entire family.We dont know what to do. Just last week we have to return to the hospital for another operation to reconstruct her neck, the scars on the neck could not allow free movement of the neck.

Our attempts to bring this to the attention of the medical service providers and hold them accountable have proved futile. The child will require plastic surgey to reconstruct her skin which is badly damaged by the effect of the reaction.

We appeal for any information, advise and support to help this girl lead a normal life. We will be able to send her pictures while in hospital to whoever cares.

Thanks.
Add Email to Story: Yes

ID: 100063 Time/Date: 07:49:50 PM PDT/ 10-09-2009
Name: Susan
Email Address: EmailAddress@notprovided.com
Story: Hi,

My prayers go out to all of you and your family members that have suffered from SJS. Unfortunately, I have a niece who is diagnosed with SJS. She is nineteen years old. She is a very sweet person. She just graduated this year. She is a great athlete. She has been in the hospital two months. She has not opened her eyes, she is badly burned, her hair has fallen out. I am not really sure what type of medication she had taken. I think it was amoxicillin.

I have never heard of this fetal disease. My heart aches for you all that have been though this. Please pray for my niece and her family.

You can contact me at augred@hotmail.com for further discussion.
Add Email to Story: No

ID: 100062 Time/Date: 02:42:27 PM PDT/ 10-09-2009
Name: roxanne eberhard
Email Address: EmailAddress@notprovided.com
Story: I have the distinction of being diagnosed by the head of Stanford University in the early 70's as the second known case in the history of California .Pictures of me were pubished in medical journals due to the rarity and severity of my condition.
My parents had no resources or experts to talk to , there was no internet to log on to.They could only stand by my bed and watch as a stream of doctors and interns paraded by to to gawk at me and take pictures as I lay incased in refridgerated sheets ,hooked to a myriad of machines .
What I remember most was being at my grandparents and being sick with what they thought was a heat rash. I remember my uncle comming home from work one day and giving a great big hug as my grandmother expressed her concerns. Then I remember being in an ambulance deperately wanting a drink of water and my mother telling me I couldn't have one.I learned later that I couldn't because my throat was almost completely swollen shut .
My next memory is having my arms tied to the bed so I wouldn't scratch myself raw and then as the dead skin started sloughing off pulling the top layer off my entire palm.
I was 5 years old.
Add Email to Story: No

Total number of records: 180 Pages:  Previous 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 Next