Name :: Amit       

Story :: Never Too Late to be Alert
There are some incidents in life we never forget. I had one of those incidents that I will never ever forget. It all started when I was 12 years old. I was studying in 8th grade. I was enjoying my life. I had dreams in my heart and goals in life to achieve. I had so many friends I could not count on my fingers. Just like every one else I had a special one. For me she was beautiful, like a nymph. She had dark, long, black, silky hair. She had beautiful deep blue eyes like the ocean. Some times I felt like I just wanted to get lost in her eyes and be one with her. She had a cute little nose. She had the most beautiful smile I had ever seen. Once in a while when she smiled at me it took all the pain and sorrow out of me. Her lips were like petals of the roses. When she spoke she had so gentle, beautiful and peaceful voice that I stopped my breath to listen to her. I liked her so much that I could not think of any thing else other than her. I was so crazy about her.

One day it was raining so hard every thing was closed. There were 5 inches of water on the road. All the sand on the side of the road was becoming mud and coming down to the road. I also got the news that the school was closed, but still I just wanted to have one look of her. So I put my raincoat on and rode my bicycle about 10 miles to my school and waited for her at the gate for 3 hours. I knew that she would not come, but I waited anyhow. I did not know that I would wait more than one year and that when she saw me again. I would not be the same.

Now, there was a time for separation. In October we had 20 days of school vacation because the Diwali festival was coming. Diwali is the one of the biggest festivals in India. All different ages of people enjoy them selves. They light candles inside the house and outside of the house. At night the sky looks beautiful because of the firecrackers. The festival goes on for 7 days. But people enjoy the festivals for 15 to 20 days. But there was this one child who could not enjoy himself because he had a fever.

I was suffering from malaria. I went to a doctor who gave me some medication. When I took the medications I felt better and then I went to play with my friends. But within a few hours the fever started increasing so I had to take pills again. It went on for a few days and finally the day arrived and it changed the rest of my life. The fever increased and I started vomiting and my body became red and small boils started popping out. The fever stayed so high it felt like I was burning inside out. Medication was not working at all. My loved ones thought that I had chicken pox. But within three days the boils on my body became bigger and bigger. Now, they were in my mouth and throat. So I could not eat anything or take any pills orally because it hurts when I take a pill so I immediately spit out the pills. Looking at my condition, my mother started crying because now I lost my hearing I could not hear any thing people said. And the festival was becoming a disaster. My father immediately went to the doctor and requested him to visit me at home. The doctor also thought it was a high chicken pox so he gave me the same medication in liquid form. After two days it became very serious. Now I lost consciousness completely.

I was chanting the name of the lord and telling my parents, " Look, The lords of death have arrived to take my soul. So goodbye and I will see you all after a time." As soon as my mother heard those words, she was overcome with grief and said, " I want my son admitted to the hospital." Still my loved ones had no idea what happened to me. When the nurse first saw me at the hospital, she asked my parents why I had burned myself. Then a doctor came and said, " Take your son to the biggest hospital because I cannot do anything. It is so serious that he will die in a couple of hours." They immediately admitted me to a bigger and better hospital.

In the hospital they diagnosed me with Stevens Johnson Syndrome (SJS). SJS is a severe allergic reaction to medication. Most patients of SJS do not survive. If they do survive they will have some kind of handicap. They kept me in the intensive care unit and they told my parents that they couldn't do any thing until 72 hours passed. I was fighting for my life. It was a battle where death took over life. But I was holding the last string of my life so tightly that I won over death. I passed 72 hours and then they started giving me medical treatments. Now, the boils on my body were filled with fluid. There was no spot on my body where there was not a hot fluid boil. Nurses had a hard time giving me an I.V. because they could not see the vein. I could not eat anything at all. And I could not stop vomiting. When I vomited the skin from inside my body came out. When I tried to sit up on the bed, the sheets stuck to my back, so the nurse had to pull the sheet off. When they tried to pull out the bed sheet, the blood came out and my skin came off. I lost all the skin from top to bottom and tongue to anus. Not just that I also lost my hair, teeth and nails. My parents asked the doctor if I would have any skin left on my body. The doctor said, " He will heal back but it will take a long time." For one and a half-months I was in the hospital. My relatives visited me at the hospital but I could not see them. All I could hear were their voices but I could tell their names by hearing their voices. Then I realized who says life is not fair? If a person loses one sense, then he will use another sense.

Then finally the day came and the doctor told my family that I could go home. Then I thought the disaster was over and I could go back to my normal life. But I forgot that I could not see or open my eyes and my eyes were light sensitive. For one year I stayed in a dark room where not even a fraction of light came in. I could not see or do any thing by myself so my parents had to take care of me. For me it was like I was born again. What ever I did it felt like I was doing it for the first time in my life. When I ate something, it felt like I had never eaten that particular food before. If I walked, it felt like I needed some one to hold my hand otherwise I would fall down. It was a completely different experience. My mother had to take me to the shower, my brother had to feed me and my father comforted me saying, " Everything will be all right. We will go to the best eye doctor and you will be on your own in no time." While I was sitting in one room of the house, I could hear all the other children playing. I was just 12 years old and I felt so much pain in my heart with guilt asking only one question to my self Why me? For one year every day and night I tried to tell myself how good it will feel when I meet her again and see the beautiful smile on her face.

I remember when that day arrived. After one year I went back to school with little vision but everything s had changed. I cannot believe to this day that, so many friends whom I could not count on my fingers were so few. My friends left me alone. They did not want any thing to do with me. There was this one word, which was following me every moment. That word was "Disabled and Handicapped". In school at lunchtime I spent hours and hours sitting under the trees by myself. No one wanted to talk to me or play with me but there was only one thing that kept me going and that was she. I was thinking that she would understand me, and she will accept me for who I am, not for how I look. I saw some one was walking towards me. When a shadow came near I realized that it was she. I was dying to see her one smile. But what I saw was a big question on her face. We looked at each other for a few minutes, then she said " I am sorry...." and then she left. It felt like the big sky had just crashed on earth and it was taking me down with it. I fell on my knees and wanted to cry out loud, but I did not shed a single tear.

I started recognizing a change in myself and a change in other people. When people look at me they do not look at the person, they look at the disability. But I did not sit and cry. I used my ability to do something in my life. In school my instructors were worried because I could not read or write. All I could do was hear. How would I keep up with other students? At home my mother read all the books to me and I listened. Then I went and took exams and still I was getting A grades. All the instructors in school were so surprised that I was using my ability to compete with life.

But there is only one thing. When I tell people I have Stevens Johnson Syndrome (SJS), as soon as they hear syndrome they think it's contagious, but it's not. This is not part of my body, which I can cut and throw out. This is something I have and it will be like this for the rest of my life. They don't look at me as a person who has a heart and feelings, they look at me as a person with a disability. Sometimes I wish I could have a normal life. I could do all those things that normal people do. Where were all my friends when I needed them the most? Where is the beautiful smile when I needed to see it most? I wish I could have someone to talk to, someone to say, " I love you." But it seems like it's just a dream. There are just dark clouds on my side of the sky, but I know there is some one behind those clouds. All I am waiting for is the clouds to clear and I can see who is hiding behind them.

Name:: Elizabeth L. Lovett       

Story::    In December of 1996, at age 16, I went to the Doctor after becoming very ill. My doctor was unsure what was causing my illness, but did find that I had a sinus infection. She prescribed my an antibiotic called Bactrim. After I started taking the medication, I noticed that it wasn't making me feel any better, I actually started feeling worse. Even though I had only taken about 4 500mg pills, I could tell there was something wrong. I remember looking in the mirror and actually watching my face begin to swell. After two days my eyes were swelling shut, and I began to develop soars in my mouth. I could actually see my lips getting bigger as I watched in the mirror. I finally decided to go to the hospital when it became difficult to breathe, it was my 17th birthday. After being admitted into the hospital, the doctors were not sure what was wrong with me. They all had different theories, test after test came back negative. It was on the seventh day that they finnally said that I had Steven Johnson Syndrome, after being diagnosed I started asking questions, and there were few answers. I was told that it was a very rare reaction to sulfa. If I hadn't realized that the medicine was making me feel worse, I might be dead or blind today. Thankfully I made almost a 100% recovery. Although I did lose some eyesight, but I can still see. I will never forget the pain this caused. I have never met another person with SJS, and it was very sad for me to read Julie's Story, I hope she is doing well.

Name :: Janell Raber       

Story ::     Our story is about our 16 year-old daughter, Whitney. She had been having ear aches, and so we took her to our family doctor's office, where the N/P saw her and prescribed Zithromax for her. This was on the 13 of March, 2002. She seemed fine at first, but about the second day on the medication, she broke out with blisters in her mouth, looking a lot like canker sores. Her lips started to swell, and her eyes were really blood-shot looking. She was also having a hard time swallowing, because of the sores in her mouth. I called back to the Doctor's office, and talked to the N/P, telling her that we thought she was having an allergic reation to the medication, and she told us that she thought that she was just going through the symptoms of a viral infection that had been going around. Since all our kids had also had the infection, we thought that maybe that was all it was. The only thing was that none of them had shown any symptoms like Whitney was. But on the 16th, when we became really worried at all the symptoms she was having, including hard to breathe, and not able to eat or drink much at all, and having a high fever, my husband took her to the emergency room, to a bigger hospital out of town. Again we were told that it was just the viral infection, and that it needed to run it's course, and the doctor doubled her dosage. Things just continued to worsen, she could hardly eat, and wasn't drinking enough, and we were afraid that she would become dehydrated. Her lips were so swollen, and they were peeling from the blisters, and she looked like she had been burned around her mouth, her lips were cracked and bleeding, and then the blood would dry, and it turned black. She was in pain from the blisters, and very miserable. She also had broke out into chicken pox like spots all over her body. She would cry and ask me to just hold her, and my heart was breaking so much for all she was suffering. We did all we could for her, feeding her soft foods, and liquids, I cleaned her mouth and teeth with Q-tips. She also kept coughing up mucus, which irritated the sores in her mouth. Her eyes would cake shut with discharge, and I would have to clean them with a warm washcloth to get them opened. We took her back to our family doctor, and saw him instead of the N/P, which by the way, is really good at what she does, I'm sure that if I had made her see Whitney, she would have realized that it wasn't an infection. But anyway, our Doctor examined Whitney, asked when all the symptoms had shown up, and he wasn't real comfortable with what he was seeing, and referred us to a infectious disease doctor, so we went that day for her to be examined by him. He knew right off what it was, and told us that she was having an allergic reaction to the Zithromax, and admitted her into the hospital right away. That's when we learned about SJS, and all it's symptoms. We were blessed to get her in when we did, she wasn't far away from it being fatal. She was dehydrated, had lost 20 lbs., and was in so much misery. She was put on the cancer floor, because of their experience in treating mouth problems. She was put on IV, and had to have eye drops, and eye ointment in her eyes four times a day, she had to rinse out her mouth with three different mouth solutions four times a day, and had an ointment put on her lesions on her body. She began to improve after being off the medication, but it was her care in the hospital and all they did that helped the most, and the love and concern of her family. She was in our prayers constantly, and we know our faith that she would get better had alot to do with it, too. She was in the hospital from the 20th till the 23rd. I have never seen anyone go through as much as she did, and I hope that I don't have to, but through this all, we have become closer, and she has become stronger. We also have become stronger. One of the nurses there at the Hospital told Whitney that if she makes it through all she has gone through, then she will be able to get through anything, and I really believe that it true. She has had to go to the eye doctor several times to watch the effects of SJS on her eyes, but she has had no scarring or loss of vision, and we know this is a miracle, as she had blisters on her eyes, also. We feel so blessed to have no ill effects from all that she suffered through, and we feel so blessed to still have her here with us. We know that this is from our faith, prayers of friends and loved ones, and the care from the hospital. Thank you for letting us share our story of our experience with Stevens-Johnson Syndrome. We hope that this may help someone else that may be going through the same thing, and our prayers are with you all. Steve and Janell Raber

Name:: Jeffrey Wolfe       

Story::    My Son's Story. My son, Jeff had a tooth extraction in 1995. Two days later he has a grand mall seizure that lasted approx 5 minutes. He was put on numerous medications ie: narcan 2mg and 10 mg of valium at this time. He was shipped to another hospital and the doctors there told me he was being put on dilatin as I was told he now has epilepsy. I told the the doctors that my son has never had seizures why would he be epilpectic now? He said HE IS NOW! The doctor said they did not find anything on the cat-scan that would suggest any problems. Two weeks later Jeff is found wondering in Wal-Mart all confused. He is taken to ER and the doctor there said that Jeff had a high fever and of course they did a drug screen on him (as all 24 year olds could be street drug users). That drug test came back negative. Jeff ended up at Merced hospital where they did a MRI and they found what they thought was an abcess in his central nervous area of the brain and short term memory inoperable by the way. The neurologist told us it would take 72 hours to pentrate the brain with antibotics and they recommend 3 different antibotics at once. They said if this burst it would kill him so they are on it! I know that Jeff had at least 5 bags of medications going into his IV. Jeff is co-herent but repeating himself as he can't remember what he says. I would say 7 hours into the medications Jeff is breaking out in this rash like a burn all over his body. He is in no distress. The doctor keeps the medications going as its life or death at this point. 5 more hours go by and now Jeff 's glands in his body are swelling up 3xs there size.. he has this lump under his chin that was the size of a water ballon. The doctor is now thinking she must stop one of the antibotics as he is allergic to one of them? Well they end taking all the antibotics away. The rash is going away slowly but the glands are still swollen. They call in diease control to find another antibotic that is strong enough to pentrate the brain but they only want one not 3. They put Jeff on chloramphenicol for 2 weeks. This antibotic ate his white blood cells up for breakfast! He can now die from a common cold. The doctor takes him off this antibotic and does an MRI with contrast and he swell up 4x his normal size plus he has no white blood cells to speak of! He should be dead. He is tranported to UCSF. The doctor there tells me and Jeff that he will probably not make it throught the night due to no white blood cells. Jeff is sitting up in bed eating his dinner and says to me I don't feel like I am going to die, MOM what is this doctor talking about? I just looked at my son and said "YOU are going to fight this and you are not going to die!" They put Jeff on the cancer ward as they thought he may have cancer in his chin of all things also. Now that Jeff has no white blood cells they have to give him 3 more different antibotics so its going well for about 7-10 hours and he breaks out in another massive rash. He is also getting neutrapenic shots to see if he has any white blood cells left to grow? They are not hopeful. This is a painful thing to go through. Jeff felt like his bones were breaking so he said. The abcess in his head has not changed but its still there too. The doctors are just buffled with Jeff's rash and his fevers are shooting up to 105 which they had been at the other hospital too. They would give him tylenol and pack him in ice. An hour later his fever would drop to 99 and shoot back up again to 104/105. Time goes by and Jeff is getting so much worse but his white blood count has gone up and the shots work. Jeff is getting worse with his skin and legs are turning blue and his testicals are swollen the size of cantalopes and have to be propped up on towels. They are taking pictures of his testicals. Well the doctors are confused and do not know what is wrong with Jeff! They want to do surgery and take out a gland from his neck and put it under the microscope and test everything known to man. This takes a good two weeks for the results. It all comes back normal no cancer no nothing! The doctors want to know if Jeff has been out of the country..He never left the state of CALIFORNIA let alone the country. Well the surgery almost did Jeff in for sure! He is sleeping with a suction tube and every oraface on his body has pus-like stuff coming out of him including his eyes. He looks like a monster not recognisable to me as my son. He has sores all over him and this rash I call a burn and his glands are swollen and he seems to be dying to me. He is a mess and oh the pain he suffered! One of his doctors went to the internet and looked up rare conditions and nothing fit his condition. He said he went to very rare and found STEVEN_JOHNSON SYNDROME and that fit him to a tee. They took Jeff off all medications and gave him some blood and told us that we will send him home when his fevers stablize and they wrapped his hands and he will either live or die its entirely up to his system. Jeff did survive this terrible ordeal and without any blindness but to this day he pulls out long string-like things out of his eyes everyday which is a God-send to being blind. He was very lucky! He had sores in his mouth that hurt and he could barely eat anything for weeks he lost his toenails fingernails one at time for two weeks and I told him to save and put them in the cabinet as we had to have some humor in all this madness! He also lost alot of his hair. Our problem here is that no one is quite sure what medication Jeff is allergic too except the choramphenicol, tegretal, depaoke, phenibartiol, iodine contrast, flaggl,dilatin, so far. These he will stay away from for sure. The doctors wanted to do an allergy testing on Jeff for drugs but thought it to be too dangerous for him and decided not to do it. I want to say that the so called abcess in Jeff's brain went a way and its gone. In 1999 Jeff has developed a seizure disorder and has not been seizure free for over 22 days. He is on Keppra 6000 mg a day and breaks through the meds every month and has 40 to 50 seizures a month in one weeks time. The doctors in our city 80,000 people will not help Jeff as they are not aware of SJS and have never seen it. We must go to UC DAVIS SACRAMENTO FOR HIM TO BE TREATED AS THEY HAVE SEEN AND KNOW SJS. Jeff is scheduled for a VNS stimulator next week to see if that will help his seizures. Its a new procedure and has worked on patients with seizures. Its alot less invasive than brain surgery and with his SJS its a safer procedure. Jeff has to stay longer in the hospital than a person without SJS. Its bad enough to have SJS and then to have this seizure disorder(which the doctors think that in 1995 Jeff could have had spinal menengitis and it left scaring in his brain and that is what caused these seizures) They do not know why Jeff has these seizures and neither do we..hes never been in an accident that we can remember. Its all so strange to us but my son is a trooper and we laugh and pray everyday and live our days the best memories we can make for ourselves.

I want say that in 1995 I tried to find any information I could on SJS and there wasn't much out there to find. A year ago I noticed that there is much more info on this syndrome. I am greatful for the info and I read alot of people's stories to Jeff it makes him feel not so alone.!!! Thanks for listening to our story... Sincerely, Jeff Wolfe/Jeanne Williams