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ID: 100095 Time/Date: 10:57:18 AM PDT/ 07-05-2010
Name: Rev.Dr.Randy Cheney
Email Address:
Story: In 1985 I was in the hospital for a water soluble milogram (spinal tap). I had had an oil based milogram in 1972 with no problems. Oil based they leave the needle in and suck the oil back out of your spinal cavity when done. Water soluble your body is supposed to rid itself of naturally. The next morning my heart stopped from a reaction to this procedure. It seems some people have allergic reactions and cannot rid themselves of the injected fluid. I was told 1 in a million or something like that, after I was revived. If not for quick action by my roommate and the will of our Lord, I would not be here now. He (my roommate) noticed I was not conscious and was turning blue. That is a quick synopsis of my experience. Thank you and may God bless
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ID: 100093 Time/Date: 07:35:53 AM PDT/ 06-29-2010
Name: Iris Cree
Email Address:
Story: My name is Iris, I am currently 40 years old and I had SJS/TEN. I guess I really had TEN because my whole upper body was affected. I was given a prescription for Dolobid (an arthritis med). I took the Dolobid for about 2 weeks. I started feeling sick on 12/31/09. I just thought I was getting a cold. On the morning of 1/1/10 I woke up and my eyes were red and I had what looked like blood blisters in my mouth. Since it was a holiday, I went to the Emergency Room. I was diagnosed with pink eye and a virus. I went home, and just hung out on the couch all day and night, just didn’t feel good. Finally, at about 4:30 am on 1/2/10 I decided to get a shower, thought that might make me feel better. After I got out of the shower, I noticed I had a red rash all over my upper body, and the blood blisters in my mouth had now turned white. I also started coughing, a dry, non-productive cough, and I was having trouble catching my breath. I woke up my husband and told him I needed to go back to the hospital. He called 911 and I was taken to the ER via ambulance, this time I elected to go to a different hospital. The doctors couldn’t figure out what was wrong with me. They decided to admit me to the ICU, finally an ICU nurse around midnight figured it out, SJS. I was transported to the Western Pennsylvania Hospital Burn Center on 1/3/10 via ambulance. They wanted to life-flight me but the weather was too bad. I was intubated before I was transported, because by oxygen levels were dropping. I don’t remember any of my stay at West Penn, everyone says that is a good thing. I was in a medically induced coma for about 7 weeks. While at West Penn I developed ARDS (Adult Respiratory Distress Syndrome). I was put in a paralytic state twice. I had a tracheostomy and a feeding tube. All of my skin sloughed off on my upper body, I lost my hair and fingernails. One of the nurses told my husband that she had seen other patients that had worse skin than I did, but she never saw someone with lungs as bad as mine. She was a nurse for 20 years. They started to try and bring me out of my coma the middle of February. I opened my eyes for the first time on 2/12/10, and started responding to verbal commands. I was transferred on 2/16/10 to Select Specialty Hospital (a long term ICU hospital) in Johnstown, PA, much closer to home. The goal at Select was to wean me off the vent. I was off the vent by 2/18/10. I still had my trach and used a trach mask. While at Select I developed pneumonia, and a lung infection. I finally had my trach capped on 3/4/10. I failed by first barium swallow test, because my esophagus was closed. I had an esophageal dilation on 3/19/10. Then I was finally allowed to eat and drink. The speech therapist told me I wouldn’t want to eat, and she was right. Nothing tasted right and it hurt to swallow. I ended up losing around 35 lbs. On 3/31/10 I was transferred to TCU (Transitional Care Unit), which was just on the floor below Select. I had occupational, physical and speech therapy. After about a week, I was able to finally walk without a walker, yea!! I also lost my nasal cannula, finally was off the oxygen. I was released from the hospital on 4/15/10. I finally went home. I really missed my children. I was only able to see them three times in the hospital, the first time I saw them was on 3/20/10. I still start to tear up when I think about that.
Since I’ve been home, I started going to out patient physical, occupational, and speech therapy. I go to lots of doctors appointments. I currently have chronic dry eye. Some of my eyelashes are growing in toward my eyes, so I have them removed every couple weeks, my eyesight has improved to 20/20 with my glasses, three out of my four tear ducts are permanently scarred, my doctor says that is a good thing, now more of my own tears will stay on my eyes. I use a gel during the day and ointment at night. My hair is starting to grown back. I lost all of my fingernails, and the nails that grew back are short and very thin. We are still not sure if they will ever grow back. I also lost/still losing 6 toenails. They are growing back better than my fingernails. They say it will take about a year for my lungs to heal. I still have a chronic cough. I have oxygen to use with activity. My taste buds were also affected. Food still tastes funny, especially sweets, and I had a major sweet tooth, cookies, cakes, any baked goods, just taste gross. I feel like there is a film or a coating in my mouth. I hope I get my taste buds back, but it is helping me maintain my weight.
I must say even though my condition was pretty bad, I’ve been making a slow but steady recovery. I am now driving and I am able to care for my children. Through all of this I learned a lot….I have an amazing husband, family and friends. We received so much support, food, money, prayers, it is truly amazing. I have new respect for people in the medical field, I had some amazing, doctors, nurses, aides, therapists, and I know I wasn’t always the best patient. As I said before I don’t remember any of my stay at West Penn, and my memory is pretty sketchy until about the end of March, that is one of the most frustrating parts. They tell me I don’t want to remember my stay in the burn unit, but it is sometimes hard to grasp that I was out for 7 weeks. I would love to correspond or talk with other SJS patients. It seems like the doctors don’t always have the answers to my questions, “it just takes time” is usually the answer. My e-mail address is Please put SJS in the subject line, so I don’t think it is spam.
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ID: 100092 Time/Date: 06:54:39 PM PDT/ 06-06-2010
Name: Marcia Toler-McCullen
Email Address:
Story: THIS IS MY MOTHER'S SJS STORY. HOWEVER, I DO NOT WANT MY EMAIL ADDRESS PUBLISHED WITH THE STORY. I do not want any unsoliticted emails, since I get enough junk as it is. Thank you.


My mom, Velma L. Toler, started getting sick the latter part of October 2009 with flu-like symptoms and an uncontrollable cough. She would not go to the doctor because she does not like to go unless absolutely has to. Finnally after a week of being sick and getting no better, I made her go because of the deep cough and sounds in her chest cavity. It sounded almost like pneumonia.

She was taken to Immediate Care in our hometown (Goldsboro, NC) on 11/3/2009 and prescribed Zithromas. Two years earlier she was there with flu-like, bronchial problems, and she was given Zithromax, but they were white pills in a prescription bottle (cannot remember if one or two week supply), not a Z-Pac. The doctor on call said this time he was giving her a Z-Pak (six day supply). If there is a “Black Box Warning” for this drug, we were not told about it. Since she has such sensitive skin to begin with (allergic to all blue dye in all food, nonfood, prescription drugs, OTC drugs, etc. -- anything with blue dye). All this is documented on all the information I provide them in typed form to any doctors, hospitals or pharmacies that she goes to. The doctor at Immediate Care was provided with all this information that day as well.

Because she can hardly take anything at all, especially the “good” drugs, the doctor said he was trying to be as cautious as he could. So, since she did not have a problem with the Zithromax two years earlier, he said he was going to prescribe Zithromax but this time in the Z-Pac form, which was a 6-Day supply. She had never had the Z-Pak because two years earlier she had used Zithromax in pill form in a prescription drug bottle.

When we went to pick the medication up on 11/3/2009, Target had given her the “generic” form, not the brand name, Zithromax, as the doctor had written the prescription. It was a 6-Day blister pack with the name Azithromycin Z-Pak (250 mg). When I gave it to my mom, she said this IS NOT what I had before. She said that she had Zithromax, which were white pills and in a prescription pill bottle. I told her that on the prescription it said that is was the “generic” for Zithromax, so I assumed it was OK for her to take. Doctors and pharmacists know her problems with other drugs and BLUE DYE. So, I was assuming that this Z-Pak was OK. So, she took the Z-Pak for the entire 6-Day period.

She didn’t get any better, but got worse, so I called her PCP’s office in Goldsboro NC, and told them what had been going on with her and that she was no better. I asked them if they could call her in another supply or call in something for her. So, they called her in another round of the 6-Day Z-Pak at Target. I picked it up on November 12, 2009, and it was the very same thing Azithromycin (Z-Pac). I blame myself for this because I thought I was doing the right thing trying to get her well.

After several days of taking the second round of the Z-Pac, the right side of her face was swollen and “reddish”, and I immediately told her not to take anymore of the drug that I bet she was having a reaction to it. This was on a Saturday, November 14th. On Sunday morning the 15th when she got up, her face was horrific looking. I told her that we were taking her back to Immediate Care that I thought she was having a horrible reaction to this medication. She had failed to inform me that while on the first round of the Z-Pac, that she did feel her face “sting” some from a red bump area, but she thought it was just where something had bit her on the face. I told her she should have told me about the “sting” while taking the first Z-Pak. Now, I feel that this was the first sign of the beginning of a medical reaction.

When we arrived, the doctor on call this time at Immediate Care in Goldsboro, NC was especially concerned, and told me if she got any worse during the day, to take her straight to the ER. He told me to come home and take pictures of her face, then keep a check on it through the day, and if it got any worse to get her to the ER immediately. He checked her face and said the fever in this infected area was 15 hotter than the rest of her face. He told her he was not trying to scare her, but that his main concern was that it was very close to the brain, and if it got there, it would be instant death. Her face was horribly bloody red, swollen, fevered, and eye completely closing up.

He said he was going to hesitate to say it was a drug reaction, but NOT TO TAKE ANYMORE OF THE Z-PAK. He told us that first he would not have given the same antibiotic back-to-back in two weeks, especially the Z-Pac. He told her he hesitated to give her anything else, so we left. Then Target called and said the doctor had called in a prescription for Clindomycin. When I went to pick it up, they were BLUE capsules. I told the pharmacist that they had it on file she could not take anything with BLUE dye. She and the doctor suggested that she open the capsules and take the white powder only. I told her NO, that this white powder has been confined in a BLUE capsule, which means the white powder has been exposed to the BLUE dye. She agreed with me after explaining this to her. My mother said she was not taking them to begin with if they were a BLUE capsule. I thought how many times do you have to tell a doctor or pharmacist that a person cannot take a certain item.

So, when we got home, Target called again, and said they were giving her the Clindomycin in the children’s formula, which was a clear liquid; however, it tasted awful. The pharmacist said the doctor wanted her to take something for her condition. So, we got it in the clear liquid form.

The first doctor at Immediate Care was being as cautious as he could because of her inability to take drugs or blue dye. I was the one who called her PCP and asked her to prescribe another round since she was still very sick. I did not know anything about these drugs or SJS.

During this second visit to Immediate Care, when the doctor told me what he said, I blamed myself for calling and asking for more medication for her. Besides, her PCP did not say anything about her coming in for a check-up, but did as I asked and called in another Z-Pak. But, at that time, before she told me about the “sting” from the first pak, I thought that since she had no reaction to the Z-Pac and she was not getting better, this would be the only one they could give her.

She told me that she felt better that night (Sunday, November 15 after seeing the Immediate Care doctor), (but she has a habit of saying that to keep from getting any kind of medical attention). On that same Sunday, I called a medical provider of ours whom we trust his judgment, and told him what was going on, and he said that I could bring her in on Tuesday so he could look at her if she was no better.

On Monday, November 16, when she got up, her face was awful looking and she said she was on fire. I called our trusted doctor again, and told him what was going on, and that I did not think she would make it till tomorrow (Tuesday) to see him. He told me to take her straight to the ER at Rex Hospital in Raleigh, NC. When we arrived at the ER, she was kept in the ER until around midnight, and then admitted to a room sometime after then. This was on 11/16/09. She was hospitalized from 11/16 to 11/19, 2009 with their diagnosis of Facial Cellulitis. It was all in her face and eyes, itching and burning, excruciating headache, and literally driving her crazy.

After a week when she came home from the hospital, her neck area became severely red, burning and itching and looked like red scalded flesh. She was given Vancomycin injections while in the hospital. I researched Vancomycin to see if this could be triggering the problem a second time. She looked like scalded, red flesh that boiling water has been pored on. She was in severe pain. She is allergic to almost everything in the world, especially blue dye in anything, and other antibiotics, and she cannot take any of the good drugs to fight infections. In my research, Vancomycin, does have blue-dye in the oral form. I cannot find out if it is in the injection form as well. We tell all doctors that she cannot take anything with BLUE DYE, because she is in misery, agonizing pain from this red scalded flesh appearance.

I spoke with a our trusted doctor concerning the neck area, and he said that the Vancomycin could have caused this outbreak, and to make sure this is put on her lists of allergies as well. He said to make sure that Azithromycin is at the top of her list.
She went to her PCP several weeks after coming home from the hospital, and her doctor was horrified. My mother asked her if this was SJS, and she did confirm to my mother that it was SJS. I had taken pictures of her before going to the hospital, and pictures of her condition on her neck after being home several weeks from the hospital. Her face was almost unrecognizable. Her doctor told her she had never seen anything like this before, and was so sorry that she had suffered like this. She told my mom to NEVER TAKE ANYMORE ANITBIOTICS again. Her PCP told her to stay away from hospitals, nursing homes, anyone sick, and do everything possible to stay well. She asked her PCP if she could give her some cream of some kind because she was in pain, itching and burning to death, and it was driving her crazy. But because of her sensitivity to drugs, she told her to just continue to use the medicated powders on her flesh. She uses Gold Bond and Desenex Foot Powder Medicated Powders to rub down in. But at this point, nothing is helping her at all.

She has had this similar problem over the last 20+ years. She was hospitalized years ago, with no one being able to confirm what was wrong with her. She had a reaction one time to something (it was a drug and if we can remember correctly, we think it was prednisone), and she was literally “burnt” from under the chin all the way down to her crotch. Her appearance was a “deep dark reddish, purplish” color, and the flesh looked as if it had been burnt with hot, boiling, scalding water. She was in complete torment. She could not bear for clothes to even touch her skin then nor now when her flesh looks like this.

So, she was admitted to the local hospital and this time was given ciproflaxin through IVs for almost a week. While she was being pumped full of ciproflaxin, her upper body from her chin down below her stomach was getting more bloody raw looking, and this medication was making the situation worse and worse. It was only getting worse, and her skin was continuing to get redder and redder, because she was allergic to what was being given to her in the IVs. Her doctor told her that he almost killed her with these drugs.

They had nurses and doctors come in and look at her, and none of them had ever seen anything like this before, and had no idea what it was or what was going on. They were horrified at her body. It looked like burnt, red flesh that had been in a fire that was burning from the inside out. She was in torment, and could not stand for anything to touch her skin (clothes or anything). That is the same way she is today when her skin breaks out like this (does not want anything to touch it). She has been seen by several dermatologists in the past from NC -- Goldsboro, Wilson and Raleigh, and none of them could diagnosis her. They did not even know what was wrong or going on with her. One told her that she had some form of psoriasis. The other two said they had no idea what was wrong with her. The only thing I could not understand is WHY NO ONE SENT HER ANYWHERE ELSE TO EVEN ATTEMPT TO SEE WHAT WAS GOING ON WITH HER BODY.

So, now after all these decades of suffering, she has been diagnosised with SJS. She has suffered greatly all these decades because of this disease. I sprayed some Neosporin on her neck after she came home from the hospital in November 2009, to see if that would help, and she said it only burnt her flesh up worse and made it even more red and painful. So, we bought some kind of new itching cream that was being advertised, and she said that burnt her up as well.

So, it seems there is nothing that can help the pain but waiting for time to go by and hope it gets out of her system altogether. She says she thinks there is a doctor out there somewhere that can help her, but I told her with all the research I have done, it takes other antibiotics or hospitalized and treated like a burn victim. There seems to be NO cure for this dreaded disease according to my research. I am certain that years ago, she should have been in a burn unit, but no one knew what was going on. She may have needed to have been in one this time. As far as we know, she did not see any specialists at Rex in November, but only more than likely a hospitalist or internalist, who probably does not specialize in such diseases.

Due to her condition, they used her own medications from home so as not to give her anything with blue dye. However, on one occasion, they came in with Clindomycin in capsule form, which are BLUE. They already had her liquid form to give her, but the doctor who was treating her, prescribed it in the capsule form. THEY HAD IT IN HER CHART SHE COULD NOT TAKE BLUE DYE, BUT EVIDIENTLY NO ONE WAS READING HER CHART. When she saw the capsules, she told the nurse she was not taking the capsules because they were BLUE, and she could take anything with BLUE dye. So, the nurse said, are you refusing to take the medication, and my mother told her YES. She told the nurse they were suppose to be giving her own medications to her, and she had the liquid form. She told the nurse they should look at her chart to see what was going on.

When the hospital sent the bill for her confinement, on the bill it showed where on two separate occasions that they administered 6 Clindomycin capsules. They gave her credit for 3 of the capsules, but not all 6. I asked my mother did she take any of the capsules at all. She said she told them could not take them because they were BLUE. I told her that she had been credited for 3 pills, but not the other 3. I said do you remember if you took any of this capsules at all. Now, she says she does not know if they gave her 3 anyway and she took them. So, we do not know whether she did or did not take 3 of them.

Her situation is EXTREME and has been in the past. What she has is life-threatening, and she is still suffering with pain, itching and burning of the scalp, head and neck.. About a month after coming home from the hospital, her scalp started having a “white, scaly” appearance and little red pimples appearing all over it. It is literally itching her to death. The red, scalded looking blotches of skin come and go on her neck all the time. She asked her doctor in February 2010, when she went for a physical, wasn’t there something she could give her for her head, that it was itching and driving her crazy. The PCP did prescribe a medicated shampoo, but then because of the “orange” dye in it, my mother was scared to use it. Her PCP told her there were topical creams, but she had to be careful about prescribing them to her as well. So, she is just suffering with all this. I asked her PCP if she had Stevens Johnson Syndrome, and her PCP told me that she did have SJS. All this severity began after taking this Azithromycin Z-Pak and being in the hospital and given Vancomycin. Now, it is now 7 months since November 2009, and she is still in severe pain, burning and itching. She uses baby shampoo and baby oil on her scalp. She covers her head in baby oil to see if that will help soothe the itching and burning. She already had some hair loss, but the hair loss is getting worse now due to what has been and still going on with her since November.

I called her PCP on Monday, April 26, 2010, and left a message asking (begging) for help in getting her somewhere - Duke, UNC, Wake - somewhere where there may be a SPECIALIST to look at her and maybe, just maybe help her in some way. Since, I had no response back, I searched the internet. I sent emails out to Duke, UNC and Wake, explaining her condition and begging for help.

I do feel there should be some warning about these drugs that cause SJS and severe reactions like she has. If the Azithromycin Z-Pak had “Black Box Warnings”, to which we were not warned about, we should have been told about it. If we had known that it could cause severe skin reactions like this, she would never have taken it. I have everything documented for all the hospitals, doctors and pharmacists in her medical lists. With her severity to medications and BLUE dye, she should have been warned that this could happen. If we had, trust me, neither of us would have had her take this drug. The doctor was given a list of her skin problems with drugs, he should have warned us that the very same thing could happen with this Z-Pak. If he had, she would have refused the drug and suffered with the flu-like symptoms without the aid of this drug. Now, she cannot get well from the painful burning and itching on her scalp and neck.

I did get a response back from Duke only. They set her an appointment up with a dermatologist there in April 2010. The dermatologist said because she did not see her at her worse (even though I gave her a copy of the pictures of her face and neck), she could not confirm if it was SJS or not. She just called it dermatitis. She prescribed an oil based shampoo, and gave her a prescription for a topical cream and an anti-itch pill. Since the cream had an FDA warning on it, she was scared to get it filled; and because the pill was an anti-depressant, she refused to take this as well. She used the shampoo for one week, and her thinning hair was coming out worse. Her hairdresser told her that her hair was thinner than it had ever been, and to stop taking that shampoo. So she did.

We went back for a follow-up at Duke one month later May 27, 2010. She told the doctor that her hair was coming out worse than ever, and she did not want to lose her hair because it was so thin as it was. The doctor told her that she forgot to tell her that it would cause her hair to fall out, but her hair was going to come out anyway. She is broken hearted that she will probably lose her hair and be completely bald. All from the beginning of the use of this damnable drug - Azithromycin Z-Pak. She prescribed another shampoo for her to try.

When I went to pick the new shampoo up at Target, it was not ready, and they said they had to mix it first. For some reason, something told me to ask if it had BLUE dye in it. They already have it on file and one of the pharmacists knows she cannot use BLUE dye. So, I asked does it have BLUE dye in it? The one mixing the formula, said YES, it does. I told her I did not want it. I was irate. The doctor at DUKE had been told that she could not use BLUE dye, and it was documented and given to them when we went on the first visit. Also, Target has it on file and was given documentation that she could not use BLUE dye.

So my mother said to forget everything, that she was taking NO MORE DRUGS of any kind to treat her SJS. So, she is suffering. Her red, pimples, white scaly scalp is driving her insane. Her neck itches and red splotches go and come all over the back and front of her neck. She cries and cannot understand why no one cannot do something for her. She keeps what hair she has left drenched in baby oil. She will be totally bald within what ever time frame is left from the use of this drug. I sit helpless because I know nothing to do. What makes me even madder, I am told no one can be held legally responsible for any of her suffering. I have even been told her case is not severe enough. How does anyone know the severity of a person’s suffering unless they have suffered from the same condition? Also, I feel because of her age, no one really cares in the legal world.

So she suffers, and we can only just sit and watch. I had never heard of SJS until November 2009. I never knew what a Z-Pak could do to a human being until November 2009. Now I know what it can and will do to a person, and for all those who think it is not severe enough, should have to experience the HELL of this disease, especially lawyers and doctors. My frustration has been published on the website, Lawyers and Settlements, as well.

Marcia Toler-McCullen
Princeton, NC 27569
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ID: 100091 Time/Date: 09:12:36 AM PDT/ 06-01-2010
Name: Jackie
Email Address:
Story: My name is Jackie and I was diagnosed with Stevens Johnson Syndrome about two years ago. Recently, just out of curiousity I have been doing some research about SJS and I've been shocked at what I've found. In 2008, just after being diagnosed, I did searches on the internet, but was unable to find much information. I find that there is a lot more out there now. Reading over some of the stories and seeing some of the pictures that are available on the internet now, I feel extremely lucky in my own personal experience with SJS.

My experience is much different, though than any that I have come across so far. Like a lot of people, mine was caused from taking a sulfa antibiotic. I had taken the drug three times to treat uninary tract infections (I had chronic problems with UTIs - I found out later it was because of the soaps I had been using) in the course of a year. Each time I took the sulfa antibiotics in order to treat my uninary tract infections, my SJS symptoms became worse; only the first two times I had these symptoms, they were diagnosed as yeast infections.

Since yeast infections are a common occurance in women taking antibiotics, the first time I had my reaction to sulfa the doctor was quick to diagnose the burning sores "down there" as simply that and tell me to go to the drug store to buy some Monistat. I did just that and upon his advice continued to take the antibiotic along with using the monistat system. At that point, I only had two days left in that course of medication and tolerated the excrutiating pain for the next few days as I continued to take the antibiotic. Upon my completing the course of the antibiotic my symptoms slowly began to disappear all the while I thought that the Monistat had been what had cleared up the problem.

The next time I was diagnosed with a UTI I was prescribed the same medication. I experienced the very same reaction only this time it started much sooner into the course of the drug and was much more intense. My entire labia majora and labia minora were covered in burning sores. At this point, thinking it was another yeast infection, I had already gone out and bought the Monistat treatment and was on the 3rd and final day of the system (I'll state the obvious and say that it did not help at all) when I went to the emergency room at my local hospital because I could no longer handle the pain. I was seen by a female doctor who stated that it was the worst yeast infection she had ever seen. Yes different doctor, same wrong diagnosis. She prescribed an oral anti-fungal medication to clear up the "yeast infection" and 30 Tylenol #3s to help with the pain then advised me to discontinue taking the antibiotics. Upon my discontinuing the sulfa drug my reaction cleared up on it's own within a few weeks.

The final time I was on this horrible drug I bought some yeast infection treatment at the drugstore as I was purchasing the medication. The reaction began to happen this time as soon the first night of my using the antibiotic and I began the Monistat immidiately upon my recognizing these familiar symptoms..... You guys must be thinking I'm a complete idiot by this point..... I had some of the Tylenol #3s left from the last time I took the medication and took them as needed to tolerate the pain at work. I was working nights at the time and had just completed the course of the Monistat the day before with absolutely no result. By this point the reaction I was having was so intense that the T3s were no longer able to help. My entire vagina was red and inflamed with huge, burning blisters that were beginning to work their way down my right leg and my throat was also beginning to feel swollen and sore that particular night at work. I went to the bathroom to examine the inside of my mouth and found there were two large sores at the back of my throat. At this point I notified my supervisor that I would be leaving to go to the emergency room.

Upon my arrival at the ER I was seen right away because of the intense pain I was experiencing. I spent hours there while three different doctors examined my vagina and throat (one of them being an OBGYN). All three doctors were baffled at what they were seeing. They stated that it was definitely not a yeast infection or any type of a sexually transmitted disease. They thought that the sores in my throat were strep throat and did testing to determine if this was a definite cause, but the results would take time to come back from a lab. They prescribed me Percocet for the pain, told me to continue the course of the antibiotics in order to prevent any infection and told me to make an appointment with my family doctor for the following day and sent me on my way.

I went home and didn't sleep a wink for the rest of the night. My husband took that day off of work to take care of our two children as I was in no shape to be tending to them. I called the doctor's office and managed to get an appointment in before lunch (not before taking another dose of the sulfa antibiotics). Luckily, this time, my family doctor recognized immediately that this was Steven Johnson Syndrome. He told me that I was having a severe reaction to the sulfa medication he had prescribed to treat my urinary tract infection. He told me that this type of reaction was extremely rare and that he hadn't seen it until that point other than in medical books. He prescribed two seperate medications to aid in the process of healing from this terrible reaction.

Upon my follow-up visit to my doctor two weeks after discontinuing the sulfa medication and after taking the course of the medications he had prescribed to counter the reaction, he stated that I was very lucky to have escaped Stevens Johnson Syndrome (three times no less) with no major problems other than minimal scarring.

I would like to thank anyone here who has taken the time to read my story in its entirty. I feel incredibly blessed that my story is nothing more than what I have described. I didn't realize until just recently after reading so many "horror stories" about SJS that it was really such a serious thing. I mean, I knew that I was never, ever to take any sulfa medications again in order to prevent that awful experience from returning, but that was about the extent of it. Everyone needs to know about SJS, especially health professionals and I truly hope that the awareness of this syndrome continues to grow in order to prevent all misdiagnosis' in the future. I think it's awesome what you are doing here.
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ID: 100090 Time/Date: 08:06:49 PM PDT/ 05-27-2010
Name: Natasha Baker
Email Address:
Story: I had SJS and TEN when I was 7 1/2 years old. Ihad just moved from my home state to GA not to long ago. I was a healthy child as my mother did not believe in medicine. She was more of the natural type.

I came home with a slight fever and told my mother that I dod not feel well and that my eyes hurt. That is all I remember. I was later told by my mom that it took seven days for her to take me to the hospital. Monday, I complained about eyes and fever. Tuesday, I slept for a long time and looked like I had the combination of the measles and chicken pox. Wednesday, My mother decided that if I did not get better by Friday that she was going to take me to the doctor. That Friday morning she went to my room to check on me and she told me that it looked like someone lit me on fire.

I was rushed to the wmergency room where doctors did not know what I had or how to treat it. I was placed quaratine in the burn unit and placed on a respirator. The skin damage was about 85 % of my body to the point of showing the meat and bone due to the sloughing of the sking. I had tons of skin graphs and my parents were told that there was nothing that could be done as I had drifted into a coma. There were told to pull the plug.

They did not and I woke up. The doctors said I was in the 1% that they did not know how I caught it. They told my mother that she must have given me aspirin. My mother never gave me anything not even cough medicine. I was told due to the complications I would be blind with a compromisized immune system.

As a teenager, I suffered through blackouts, grayouts, temp blindness, and being sick all the time. The doctors would give me medicine but I would have bad reactions. Then because everything that was happeing the doctors said I would not make it to adulthood.

I am happy to say that I am bout to be 28 years old. I am a certified culinarian and pastry chef. I still have complications with the side affects and there were a few scares that I had relapse but I am okay. I know that I am not out of the woods and I really do not think I will ever be but I try to live life to the fullest and thank my parents for not taking the other choice.
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ID: 100089 Time/Date: 01:37:08 PM PDT/ 05-17-2010
Name: Paul Kennedy
Email Address:
Story: I have been diagnosed as Bi-Polar for the better part of 10 years. Last year, I hit a particularly low spot in my life in which I became suicidal. In an attempt to protect myself from myself, I checked myself into a psychiatric clinic. During the course of my stay, the psychiatrist on staff changed my medication and put me on Tegratol and Lithium. I am of Asian decent but I was never made aware of the FDA Black Box warning. Four days after I was checked out, I ended up in the emergency room for what looked like a severe case of pink eye. On admission, I had a temperature of 106.5. Within 2 days, I was finally moved to the ParkLand Burn Unit in Dallas, Texas where it was determined that I had SJS. My SJS progressed to TENS with 42% of my body inside and out having been affected. I stayed in the Burn ICU for 2 and 1/2 weeks with my family by my side. I was able to return to work 1 month after the onset of the disease.

I originally had severe dry eye, a significant loss of taste, sever sensitivity to heat and cold, as well as sever itching. Taste has returned to almost normal as well as a higher tolerance to heat and cold. I have a permanent ulceration on my right eye which causes me double vision. I developed scars on my skin due to all of the itching and I still have pigmentation spots.
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ID: 100088 Time/Date: 07:07:00 AM PDT/ 05-08-2010
Name: Joanne Palmer
Email Address:
Story: I am a 48 year old woman and was just recently released from the hospital where I was diagnoised and treated with this
horrible condition. Until 2 weeks ago I had not even heard of
sjs. Needless to say it is now a very common topic with my family. I truly thought I was dying when I went to the Emergency Room on April 23rd, 2010. I have two types of skin conditions, Psoriasis and Vitaligo. I was in pain for over a
month and thought I was just having a terrible flare up with my known skin conditions. To my surprise I woke up on that morning so swollen that my eyes were swollen shut and I felt like I was on fire from head to toe. I was in so much pain and my skin was falling off everywhere. I thought my eye where going to burn out of my head. My husband had to nearly carry me to the car. When arriving at the hospital I had never seen doctors and nurses move so quickly. They at first told me I would be going to the Atlanta Burn Unit in Atlanta Georgia, but shortly my regular Doctor decided to keep my at that hospital until they could figure out what was going on. He called a Specialist in to see me and that was when I first found out that I had such a horrible medical condition and that it was no easy solution to fix. My immune system shut down, I had no Iron or Calcium. I had spots on my lungs that later turned into pnemonia. My hair was falling out everywhere and my skin falling off everywhere. My asophicus was infected and swollen to where I couldn't swallow. I was so swollen that my family members could hardly reconize me. I have had medical problems in my life, too many. But nothing ever like this. For the first 5 days I really thought I was going to die, and a few times even thought It would be okay if I were, cause the pain would go away. And not to mention the hurt and pain I saw in the faces of my husband and children. I don't completely understand this condition fully yet, but will grow to know it well. My family remains fearful and I can't stand to see their pain. But in time I suppose we will all learn to deal with it the best way we can. I still have many Doctors to see, including an Eye Doctor, for my eye sight is so blurry I can barely read or write. But for now I will remain hopeful and would gladly appreciate any and all information containing to the matter. My husband and one of my Daughters are constantly researching for any information they can find. I only have them to depend on and they have been great support through it all. I only wish they didn't have to worry with this at all. No Family should have to. I will do all that I can to raise awareness everywhere I go from here on out. Thanks for any information. The Doctors have said this was caused by and antibiotic I was taking in March 2010 but haven't given me the name of it yet. I find this appauling!

Joanne Palmer
3413 Ravenwood Drive
Lithia Springs, Ga. 30122
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ID: 100087 Time/Date: 01:20:53 AM PDT/ 05-02-2010
Name: kathryn lawton
Email Address:
Story: Hello, my name is Kathryn Lawton. On Martin Luther King’s day in 2005 I fell off of my Mema's deck. The fall triggered me to have epileptic seizures. My doctor tried me on a few different medications and finally placed me on Carbatrol the spring of 2006. At the very beginning of summer I began to get red dots all over my body, I missed the last week of school because of it. When we went to a doctor they assumed (because I never had it before) that I had chicken pox. This was when I was 13 so it was rare but not unheard of. They put me on meds for it and for a while it was fine, but then right around my 14th birthday I started to get bumps up and down my arms. Once again we went to the doctor and they assumed it was poison ivy (which isn’t uncommon where I live) so we waited for it to heal treating it with benedryl and washing it regularly, but it just got worse and worse until it covered my chest. My step father did some research and he thought it was eczema, but my mother wanted to take me to the doctors again anyway. I had an appointment to see my neurologist on the same day we were going to the doctors. My mother suggested that the medication I was on I might’ve been allergic to, but the doctor said it was impossible and REFUSED to take me off the medication, and after going back several times all he did was switch me to the sister medication; Tegratol. Big mistake, and of course the doctors couldn’t figure it out. I began to get worse and worse.

Every summer I go on vacation to the Outer Banks with my father and his family and OBX is my favorite place in the world so after many arguments with my mom I convinced her to still allow me to go because at least then I would be in a place I was happy. Unfortunately my skin had gotten to the condition where I was completely miserable the whole time I was there. All of my skin all over my body had become red and puffy. It hurt to touch, to lie down, to eat, and sleep. It even hurt to breathe. Before my sickness I was 110lbs. At this point I was at 85lbs. One of the nights I had a fever of 105 and my stepmother and my nana forced me into a tub of cold water. It was like torture. I felt like I was being stabbed with thousands of knives. I screamed and cried, the neighbors probably thought they were trying to kill me. Finally they gave up and rushed me to the hospital. I hadn’t eaten in days and I was dehydrated on top of that even though I was drinking water. The doctors placed an IV in me and ran some tests. They couldn’t figure it out. But while I had the IV in I started to feel hungry again and they gave me food. They thought if I was eating after so long of not wanting anything to eat that this must be a sign that I was getting better. They gave me some lotions to help my skin and pain meds. Unfortunately as soon as I got back from the trip I started to get worse and worse. My skin started oozing proteins out of my pores. I couldn’t eat. My eyes would swell shut over night and my skin began peeling.

One day my mother had set up an appointment with a dermatologist. It was still summer and I was sitting in the waiting room with my mom wearing a full blanket and sweats. I was so embarrassed. I felt the eyes of everyone on me. Finally the doctor came out to call me back and when he saw me he straight up told my mom "you need to take her to the hospital right now." luckily the office we were at was right next to Mary Washington Hospital. Unfortunately Mary Washington wasn’t fully equipped to help me. once they were sure I was stable they medivaced me to VCU where they took me back and kept me from my parents for hours before they came out to tell them that they had no clue what it was and for now I was stable but it was very likely I wasn’t going to live through the night. For the time being we could just pray. Obviously I DID make it through the night and I DID get better.

When I entered the hospital I was 74lbs and dropping. I don’t remember much of my hospital stay because they kept me pretty doped up on morphine because I was in so much pain but I know I didn’t sleep for days, I was losing my hair in clumps. I lost 7 layers of my skin, I was horribly emotional and rude to everyone(I’m medically bipolar so most of that was because of the medication) I couldn’t walk or stand on my own and I had begun to hate myself and my body. When they finally figured it all out they put me on the meds and everything I began to heal (slowly) but the downside was I was so hungry all the time. They were constantly trying to give me food because I had become so malnourished that I needed foods in my system. After 2 weeks I was stable enough to go home. I had to take a whole boatload of pills and I was constantly being slathered in lotions and creams and all this stuff that made me extremely uncomfortable. The only time I wasn’t miserable was when I was in a bath. Eventually I let my grandmother shave my hair off. That was so difficult for me. I cried and cried and I sat in front of the mirror for hours just staring at my bald head. I knew I would be starting my freshman year of high school bald with ugly skin and scars on her body.

It came as no surprise that I sunk into a deep depression. Even as my skin began to heal and clear up I didn’t begin 9th grade with everyone else I was still too sick for that. I had to wait 3 months before starting school. By that time I had missed pretty much all of my first four classes (my school is set up where we take four diff classes each semester. there were 2 semesters). When I returned to school I was bald and I was 135lbs. I felt fat and ugly. I couldn’t hide from people and many of them would tease and torture me. Calling me names or covering their faces as I walked by saying they didn’t want to get infected. There were times I would fake feeling sick just to avoid them. The worst of it was when I had to wear a wig. Kids would come up behind me and grab it and run off with it or they’d say horrible things to me. Would wear hats and just to make me feel bad the kids would say something about it. The teachers knew I had permission to wear hats but the students would make a big deal just to embarrass me.

When I was around my family and friends I had become a different person. I had become rude and moody and I couldn’t control it. My mom took me to a therapist and she said m medications caused my hormones to go haywire which had also caused some of my seizure problems. Finally after much time and many arguments with doctors I was finally down to taking two medications: Depakote; for my seizures, and birth control; for my hormones. I finally had some control in my life. My hair was growing back I had been having less and less seizures.

now I’m 2 months from being 18, I’ve graduated high school, I just passed a placement test for nursing school and I’ve never in my life been so proud of myself. In fact my senor prom is next weekend and even though I still have scars on my legs, I’m wearing a short dress. I still have allergic reactions to random things, nothing food wise, only products like makeup. But my skin has never looked better my hair is full and thick and long again and I love it. Plus my weight ha dropped from being 135/140 to 115 and I’m so proud of that.

Had it not been for my experience I don’t think I would be anywhere near where I am now. It was a horrible thing to go through but I learned from it, accepted it. Now I’m here alive and well and I want to help others who need help dealing or understanding. My heart and prayers go out to all of you and please know I’m here to help.

-with love, Katie
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ID: 100084 Time/Date: 05:34:00 AM PDT/ 04-27-2010
Name: Lynn
Email Address:
Story: My 7 year old son is recovering from SJS after spending 11 days in hospital, he wasnt on medication and was healthy until he got it, they are saying it was caused through a virus or infection wich i thought was strange as he wasnt ill untill he got SJS. Im just gratefull that hes on the mend.
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ID: 100083 Time/Date: 01:36:53 PM PDT/ 04-14-2010
Name: kia green
Email Address: prettykia@YAHOO.COM
Story: I Was sick with SJS & TENS from taking the pill Lamictal. I laid on the couch for a week not knowing what was wrong with me, I went to the ER they had no idea what my problem was so they diagonsed me with Strep Throat & sent me home. I continued to get sicker I couldnt see,walk or swollow soon I couldnt breath. It was time to call 911. when I got to the hospital my skin was comimg off in a matter of minutes my body had changed. I ended up with a Trach in my throat both Lungs colasped Blindness & Scaring in my Eyes. My body was rejecting the pain Meds so doctors put me in a medical induced coma they also had to paralize me. Doctors told my family I wouldnt make threw the night but I did my best to stay alive I didnt want to die. When I finally woke up what I saw was a Monster I d myself I didnt want to look like a monster for the rest of my life cause doctors said I wouldnt get my color back & I would never be the same. Im still having issues with Depression, I have no fingernails or toenails and I will have trouble with mt eyes for the rest of my life but I have learned to accept mysef for who I am. I have never met anybody who has had SJS I use to feel like I was the only person in the world with this syndrome but im glad to know im not alone
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