Name :: Cynthia Holt      Email_address :: EmpressofQ@msn.com

Story ::    I just heard of this syndrome on the tv today. A little girl just lost her sight from SJS. It reminded me of an episode I had, and I was wondering if SJS was the cause.

About 8 years ago, I had a kidney infection. My Dr. prescribed Bactrim. After taking it for about 2-3 days I started to develop fever blisters in my nose and mouth. Since I get them occasionally I did not even think about it. Then they got so bad that I could barely eat. I had never had them so bad. I went back to the Dr. and he immediately gave me a shot of Benadryl or some antihistamine. He told me that I had a serious reaction to Bactrim and prescribed Maxequin instead. I then broke out in a rash with severe itching within about a day. I went back to the Dr. and he pulled me off all medicine and said to just wait and see what happened. I finally got better even the kidney infection. Could I have had SJS?

Name :: John Bundschuh       Email_address :: jhb5901@aol.com

Story ::    Today is New Years Eve, 2004, a special date for my wife Marilyn and me. We met twenty-seven years ago. She became my world. My love, my life.
I have not written her story as it is to painful...the remem-bering...then I think of the pain she endured. Today is our day...today has to be her day...the day her story is told.
Marilyn was diagnosed with breast cancer in February 2003. She had chemo and radiation. In March of 2004 during a routine exam they found a spot on her lung. The spot was removed and treated with chemo. On September 15, 2004 she had a seizure. They found two lesions on her brain.
The pressure on her brain caused her to have left side deficeit which she worked through with physical therapy. She was back to 85% of use and gaining daily.
One of the drugs given was Prednisone. This is the one they think started the SJS.
She started with itching scalp. After a few trips to the radiologist who said it wasn't from the radiation treatment, she went back to her doctor. By now a small rash was developing on her face and back. Her throat was sore, food did not taste good and she had a cough.
Marilyn was admitted to the hospital on Saturday, October 16th. The rash spreading. She had a hard time eating. They said she had 'thrush' in her mouth. Her lips were bloody and raw with creamy phlegm being coughed up. On Sunday as she was washing her face and changing her gown I accidently touched her skin and a dime sized piece of skin peeled right off. Within a couple of hours the skin on her back started to slough off.
On Tuesday, October 19, 2004 she was diagnosed with having SJS and transported to another hospital with an intensive care burn unit.
They saved her sight and she fought hard. Most of her body was wrapped with special burn dressings. What wasn't banaged was covered with a 'gel' to protect from her from infection. By Friday, touching her to apply the gel caused more skin to slough off. She was put on a respirator. Friday afternoon we were told she would not make it. She was by now almost a full body SJS victim...or is that a TENS victim?
The Burn Unit opened up their hearts to us. Gave us a meeting room for family. Let us stay 24 hours. Told us to have anyone come that wanted to see her and say goodbye.
She could not talk but through finger movements, lifting her eyebrows, moving her legs ever so slightly she got to say good bye to friends and family. The doctors turned the ventilator off at noon on Saturday. They left the vent tube to make it easier for her to breath.
She fought hard. Her heart rate was between 160 and 200. The doctors said a good young heart can only take a couple of hours at that rate. This was at 3:30 Saturday afternoon.
The vent tube had to be suctioned every fifteen minutes. I realize now that that must have been lung tissue. Morphine was increased. I sat by the bed an arm through the rails one hand on her chest with her hand laying over my other arm. We always liked to hold hands. Family sat with me. Son Jon just stared at his Mothers bloody oozing face as she fought. Her heart did not want to quit.
At 4:00 AM Sunday morning I reached for a sip of water. Jon said, "That's it!" Marilyn lost the fight. When her heart stopped I noticed her face looked 'better' as the blood had stopped oozing from her exposed pores. I kissed her cracked bloody lips.
I sit now with tears for companionship on this New Years Eve...our night. There is no Happy New Year.

Name :: Christopher Drowne

Story ::    Back in November of 2002 when I was 37 years old, I was diagnosed with SJS. It started out as a fever and a felt like I had the Flu. I starting taking Tylenol and as my fever got worse I started to take Advil to help reduce my fever symptoms. This was a Friday afternoon and by Friday evening my fever shoot up to 103F +. My neck and head hurt and felt like they were going to explode. I continued to take the Advil throughout the weekend. On Monday, I went to my regular doctor. There were some signs of blistering on the inside of my lips, my fever was still very high and I was very weak. He said that it seems to be a viral infection and the sores in your month look like canker sores. My doctor knew that I get canker sores so he didn’t think anything of it. But to be safe he wanted to see m on Wednesday as a follow-up appt. Once again, I continued to take Advil to help with my fever and body pains. By Tuesday morning, I started to develop blistering in my mouth, lips and my tongue. My breathing was impaired and I couldn't sleep. By early evening my mouth was full of blisters. At one point, I was able to tear the skin from the roof of my mouth. I can't describe the pain. It was like someone took a blowtorch and aimed it inside my mouth. My eye started to begin to tear and form mucus to a point that I was having a difficult time seeing.

My neighbor who is a Registered Nurse, God bless her soul; told my wife that she's seen this type of condition before and said it could be SJS and that you need to go to the doctors ASAP. Well when I woke up that morning, the pain was ten times as worse so my wife took me to see my doctor. My doctor took a look at me and was very concerned. My wife mentioned to him about SJS. He wanted to know where she heard about SJS and she told him that her neighbor who is a Registered Nurse mentioned it the other evening. My doctor said that your neighbor is a very smart person. The next thing he said was that you need to be admitted to the hospital.

When I arrived at the hospital, my condition was not getting any better but much worse. More blisters formed in my mouth and my tongue. It also started to spread to my throat and the inside of my nose. My genital area also started to form blisters. The hospital I went to (local) started to do tests on me to try to diagnose my condition. I had a CT scan and a MRI. My doctor checked up on me and decided to transfer me to Beth Israel Hospital in Boston where they have specialist on SJS and how to treat it.

I was placed in the intensive care unit for 4 days with an IV at Beth Israel Hospital. The burn center and infectious disease were called to review my condition. They started treated me for SJS. My condition was stable but not better. I was burned from the inside of my body. I couldn’t eat or drink anything. The pain was too much to handle. I couldn't swallow my saliva and needed a suction tube to extract the salvia from my mouth. My eyes were very sensitive to light and swollen. They were red and full of mucus. The worse part was the blistering of my skin inside my body. My lips were blistered and swollen. My face was red and swollen and I lost 20 pounds in 2 weeks. I also developed Pneumonia, which also made the treatment even more difficult. I never want to experience this again. After 4 day in the intensive care unit, I was transferred to a shared room were the doctors monitored my condition. The doctors treated me very carefully because they didn't want the blistering to start forming on the outside of my body. I feel very fortunate that this did not occur and that the SJS was confined inside my body and hit all my membrane tissue. The doctor was still concerned because the treatment they were giving me via IV was not working and I still had Pneumonia. They changed my medication to a different dose and that seemed to stabilize my condition. Unfortunately, when the medicine was introduced through the IV, it would really take a toll on me and increased the swelling. Even though this occurred, it was slowly helping me get over this terrible disease. It took 2 weeks for the disease to stop forming. I was sent home the day before Thanksgiving. It took approximately 6 months to get over SJS.

After 2 years of having SJS, I still feel the side effects. My eyes are very sensitive to light and I must wear protective eyewear in the sun or my eyes will start to burn and water. I contract conjunctivitis more frequently. I also suffer from cloudy eyes and occasionally my eyes become very dry. My vision is not the same and since I wear glasses it's worse. My taste buds are still not 100% and some foods still taste different or bland. I also suffer from chronic neck stiffness and pain. It’s difficult to sit for a long period of time looking at the computer because my neck will become very stiff. Since the majority of my work is in front of a computer, it sometimes makes it very difficult to concentrate. Fortunately, the scaring inside my mouth, nose and lips has healed completely. By looking at me would never know that I had SJS. When I tell people what I had, they say that they never heard of the term. That’s why I feel strongly that the drug companies need to place WARNING labels on the front of the bottle stating that this medicine (ADVIL or MOTRIN) could cause SJS and it should state and list the possible side effects and what to do if they occur. For example, if you develop any signs of blistering in your month or body to stop using this product and consult your doctor immediately. I also feel that the makers of ADVIL are liable for what happen to me and how this has changed my life. Wyeth (makers of Advil) failed to warn the public or educate the medical community about the possible risks of SJS. Luckily, my neighbor knew about SJS and told me to go to the doctor immediately. I honestly feel that because she was aware of SJS she helped my wife direct my doctor in the right direction and to act on the situation before if got any worse. Who knows how long it would of taken any doctor to determine that I did have SJS? I don’t want to think about that and I consider myself fortunate.

I guess you could call me a SJS survivor. But without the help of my wife, children and family I don't think I would of made it. When the doctor said that this could be fatal, I just couldn't believe it! I said to myself that this (SJS) will not take me down!! I think the person who I want to thank mostly is my neighbor and friend. If it wasn't for her, I think things could of been worse. She informed us about SJS. Before that time, I never heard of the disease. Thank you!

Name :: Donel Rourke       Email_address :: firebizness@yahoo.com

Story ::    I don't really know if my 2 year old had SJS but here is my story. One day my little girl was sick and running a 102 degree fever so I gave her Motrin because the other med. did not work. Within minutes she broke out in a red rash all over her neck , chest ant back. I immediatly gave her some allergy med and the rash went away in two hours. Not sure if the Motrin caused the rash I gave her another dose later that night and sure enough the rash came back. Again I gave her allergy meds(homeopatic), and the rash disappeared again. I didn't give her any more Motrin until when she went to the Er with a broken arm and they gave her some Motrin, but this time there was no rash. So I don't know. I do know that if anyone I know breaks out in a rash after taking any meds I will treat them with allergy meds immediatly. I just pray soon the drug companies will start working toward better health instead of the almighty dollar.God Bless

Name :: katie

Story ::    For 20 years, I had epilepsy. I had over 20 seizures a month and had to be on 4800 mg of medication. In 1996, I made it from February until September with no seiuzres. Then my doctor put me on another pill that changed my life. In February of 1997, I woke up one morning dripping in sweat. My dad took me to the doctor and he said that I was hotter on my left side than on my right and he couldnt figure out why. He told me just to relax and get some rest. From leaving the doctors office, until waking up at the clinic, i went into a coma. My parents told me it was a week. When I woke up my mom and sister were on either side of me. When I was awake and could understand everyone, my mom told me that I almost didn't make it. The doctor told them that they weren't sure I'd make it thru the night. They gave me 12 shots to save me. I had a blister on my back the size of a football and alot more. I lost my skin, a little hair, all my nails and 78 lbs. in 3 weeks. I also had amnesia for 1 1/2 years. I knew my mom,dad and sister, but had to be reintroduced to the whole family. My hands and legs were more damaged than anything. All year every year my hands are a bit red and also a little cracked. They bleed during the winter. I have to put lotion on my hands and legs every other night during the winter. Just my hands everyday though. I had brain surgery done September 22, 1998, and have been seizure free ever since. I no longer have short term memory, but I am enjoying a normal healthy life.

Name :: Maria Couzens       Email_address :: lulucouzens@yahoo.com

Story ::    I think that it is a miracle to be here sharing my story with others, on July 19, 2004, I went so see the doctor because I had sore eye, he said I had throat infection he prescribed penicillin and garamicin drops, I took the medicine and I felt worst all night, by 9:00 am next day went back to the doctor's clinic, my eyes were very puffy and my mouth full of blisters, he said I had Chicken Pox, I was sure I had chicken pox before, so he was so sure he prescribed Ratio-Acyclovir and Ratio-Nystatin Drops I took only 2 doses and by 4:00 m. I knew something was wrong, I asked my friend Linda to take my daugther Jessica (8 years old) to her house, and my son Robert (12 years old) will stay with my husband Wayne, I knew I had to go to the hospital the doctor had misdiagnose the reaccion of the previous medicine, by 7:00 p.m. my husband took me to the E R of Burnaby General Hospital in 2 hours the dermatologist told me I had Steven-Jonhson Syndrome, I was scare because my sister Clara died 14 years ago from SJS complications she was only 16 years old, the doctor told my husband the diagnostic, I told my son who is very mature to search in the internet for SJS and talk about it with my husband, I spent 4 days there and they transfered me to Vancouver General Hospital, at one point I was in the ICU and CCU, I spent 3 weeks there, I had tracheotomy and feeding tube and with the amount of drugs in 20 days I had very weird dreams they were so real for me, that my family got really worried because I couldn't see and I was asking or paper and pen to communicate with them I gave weird messages about death people, but I don't remember anything about it; my sisters-in-law came over from Summerland B.C. to take care of the house, my mom and sister came over form Mexico because everybody was very scare I was very close to die, by Aug 12,2004 I was transfered to the Burn section, I was discharge on Aug 23, 2004 with problems like dry eyes, my mouth had suffered some adhesion of my lips and part of my tongue in my gums, I had hyperpigmentation in my body that will take few year to recover, frequent coughing, asthma and problem in my finger and toe nails. I think that for me to be alive it is a Miracle my family and friend prayed at all the time and I think that my wish for life was strong in my mind because my kids and with all those dreams that helped me to feel strong at all the time, plus the helped of the medical team that was there for me at 24/7, I still here to share with you.! Thank you! for your support.

Name :: Jim Fryrear       Email_address :: jfryrea@juno.com

Story ::    On Christmas day of 2004,my youngest son Jonah just didnt seem interseted in participating in the days activities.He was very lethargic and had been coughing non-stop for two days previous.He didnt have an appetite and just wanted to sleep.We allowed him to rest and he slept for 16 hours straight.The following day my wonderfully brave wife treked through 14 inches of freshly fallen snow in our vehicle to take my son to local emergency medical center where he was seen and diagnosed with having the chicken -pox.They gave him Motrin upon his arrival and gave us two prescription medications to treat the itching and the cough.We did as we were told and gave our son the medicines as well as childrens Motrin for the remainder of the day.He woke the next day to our horror,his lips were swollen about 20 times their normal size and his eyes were swollen and puffy.We immediately called the med center and were told that he must have had a reaction to the Codeine in the cough syrup and to discontinue its use but to continue the use of Motrin for pain.Again,we did as we were told and things got progressively worse.By now it is Weds of the week and he is unrecognizable.We immediately call his pediatrician and are seen shortly after that.Immediately upon his arrival our 6 year old son is diagnosed with Stevens-johnson Syndrome and we are told to discontinue the use of all medications and to immediatly go the seek the care of an infectious disease doctor at a hospital 30 miles from our home.They take one look at our son and immediately admitt him in the hospital,where we spend the first few hours being informed of the statistical horrors that are associated with this disease and our told of their concern for his eyesight.They had fully examined him and found lesions that developed on his eyes.We were horrified about this news and of course immediately prayed and called all of our love ones to share the bad news.Fortunately though they were able to start the right meds on my sons eyes and he has some light sensitivity but no loss of sight.As the days passed and the care for him continued we asked all the physicians that came in contact with him what they believed to be the cause.They disagreed with us that it was related to Childrens Motrin but on our discharge papers we were told to discontinue the use of Childrens Motrin,Go Figure.Thankfully,our child was saved by the knowledge and care of a wonderful pediatrician who had the foresight to take the time to do his homework about our sons conditions versus just simply dismissing it as the chicken pox.
On a last note,we noticed a difference in our sons health almost immediately upon discontinuing the use of Childrens Motrin.

Name :: Tom Roberts

Story ::    When I was 16 years old in the late 1980's I suffered from SJS and at the time I never really fully understood the true severityof this disease. Ialways remembered the symptoms and kept it in the back of my mind of what I went through and the thought of never wanting to have to live through that again in my lifetime.
About one week ago, I started to feel the early onset sypmptoms of SJS but didn't want to admit that I was having another episode. Fortunately I got to the hospital and was surrounded quickly by the right specialists and they began intensive therapy to try to freeze the syptoms so at least they wouldn't get worse than they already were getting. The fact that I was informed going in, to the fact that I had suffered from this, certainly directed the medical staff to handle my case with special care and got me through what I imagine to be many of the first mis-diagnosis that can be fatal in some cases.
I am finally able to see again and feel well enough to do some looking on the internet and was thrilled to find your website. This has been a tremendouse help to me to answer my questions and be much more informed in and proactive in discussing my conserns with the medical staff and am already thinking about what I'll need to do to minimize my chances of this happening again in the future.
After reading your site more extensively, I now fully understand how lucky I am to have avoided some of the more devastating affects of SJS and my thougts and prayers go out to all those people that have had their lives turned upside down by something so completely out of the blue.
I think this foundation is a great resource for spreading the word about this disorder and though education I believe this is something that will help directly impact lives. Thank you for being there as a resouce for me and thousands of others like me. Regards, Tom

Name :: Elizabeth Ferguson

Story ::    I had SJS in the late 60s as a child from too much penicillen. Back then cases were extremely rare. I have pictures that show my skin peeling, blisters, etc. I made a complete recovery as a child thanks to the quick thinking of a very brilliant pediatrician.

Name :: Jeannine Kelley       Email_address :: teddie125@aol.com

Story ::    I am not sure if my story is any different but I must admit the experience was very scary for both me and my daughter. I was about 7 months pregnant when I rushed my daughter to the family doctor. At the time my daughter was only 6 years old. She was running a high fever and was complaining of chest pain. Upon seeing the doctor, he told me she had an upper respitory infection and he gave her two different medicines. One was perscription and the other was an over the counter medicine. For the first 24 hours she seem to be doing well. One morning i noticed that her lips were swollen, they were so swollen to the point that she could hardly open them. I also noticed that her lips were peeling almost raw. She wasn't able to keep anything in her stomach. I called her dad to tell him that we need to get her to the doctors as soon as possible. Something in the way she looked didn't look right at all. We rushed her to hospital and they said they were unsure as to what was wrong with her. They admitted her into the hospital. Several long days had past and they still were unsure as to what was wrong with her. As the days went by she got worst. At one point she seem tp be near death, with her not having ate or drank anything in days. I refused to allow them to cut her stomach open and place in a feeding tube. I refused to allow them to have me dress in universal precautions because my daughter was only 6 years old and I didn't want her to see me dressed that way because I already knew she was scared. Altho they were concerned at the fact that i was pregnant and they still had no idea what was wrong with my daughter, i told them that if she is going to die then they better take me with her. i wasnt going to allow my daughter to die and i wasnt going to watch her go because they had no idea what was wrong with her nor did they know what else to do to help her. As time went on they bought in every doctor you could think of to try to find what could possibly be wrong with her. They came to me one day with a long article of SJS. They explained to me that she had the symptoms. They knew how to treat it. they told me that she had to withdraw from all of the medication. They stopped all drug treatment and I was told to just watch her and notify them if anything happens. I am happy to write that in 2 days she made a wonderful recovery. She just sat up in bed one day and smile at me and told me that she wanted some jello. I was too happy to get her anything she wanted. i knew then that the experiece was truly over. What seemed like months, only lasted 12 days. Those 12 days I spent in hell. I thank God to this day that both her and her little brother are doing well. Thank you for reading my story.