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| Read stories results: Found 180 matches out of 180 records.
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| ID: | 100091
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Time/Date: | 09:12:36 AM PDT/ 06-01-2010 |
| Name: | Jackie |
| Email Address: | EmailAddress@notprovided.com |
| 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. |
| Add Email to Story: | No |
| ID: | 100090
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Time/Date: | 08:06:49 PM PDT/ 05-27-2010 |
| Name: | Natasha Baker |
| Email Address: | zomars@yahoo.com |
| 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. |
| Add Email to Story: | Yes |
| ID: | 100089
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Time/Date: | 01:37:08 PM PDT/ 05-17-2010 |
| Name: | Paul Kennedy |
| Email Address: | paulcalvinkennedy@gmail.com |
| 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. |
| Add Email to Story: | Yes |
| ID: | 100088
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Time/Date: | 07:07:00 AM PDT/ 05-08-2010 |
| Name: | Joanne Palmer |
| Email Address: | JoannePalmer87@yahoo.com |
| 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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| Add Email to Story: | Yes |
| ID: | 100087
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Time/Date: | 01:20:53 AM PDT/ 05-02-2010 |
| Name: | kathryn lawton |
| Email Address: | pru345@yahoo.com |
| 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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| Add Email to Story: | Yes |
| ID: | 100084
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Time/Date: | 05:34:00 AM PDT/ 04-27-2010 |
| Name: | Lynn |
| Email Address: | EmailAddress@notprovided.com |
| 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. |
| Add Email to Story: | No |
| ID: | 100083
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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 |
| Add Email to Story: | Yes |
| ID: | 100082
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Time/Date: | 07:39:53 PM PDT/ 03-30-2010 |
| Name: | irzumjan@yahoo.com |
| Email Address: | EmailAddress@notprovided.com |
| Story: | my kid name is ali ghazi when he was 2 years old he had fever i take panadol syrup after two days of fever i go to my nearest clinic dr gave "ridmal"its a sulfa drug syrup for antimalaria.after that my child conceous next evening we run a hospital when we go to hospital i wach his face and hair by water because i understand he had high fever when we are in the way my kid unconceous when we reched hopital they give him napa and cecrol(cefxine)i think some spell mistake.ali ghazi is fine after that i go to next day to my family doctor when some little blister starts he take another antiboitic .after one day blister become large we go to speelist doctor he gave him titan injection daily dose for 5 days but after 2 days a skin spcelist said to me stop all medication and go to most best hopital.we go national liaquat hospital due to not any room we back again small hospital then i try next morning to admitted ali he acecpted and admit in ICU now his all body were just like burn his face, hand and legs .we stay more then one month there.after that docters release him after another one moth all blisters healed slowly but his eyes closed doctor and his vision low and low but doctors do nothing only takes some eyes drops every 5 minutes after three months when he was blind then doctors do operation of amt and tarrssoraphy in one eye after one month another eye.during these i search internet for new treatment i saw a name lv parasad eye institute in india i try to go.i got an appointment then i take visa for family and we travel pakistan to india .when we reached there dr sangwan says how can i stemcell its very dry eye and not healed this moment .my whole hope distroy in one day .my one years struggle finished in one day.after that comming pakistan i dont stop to search best hospital in world then i email differnet organization for treatment and education i received books for kid from usa,uk south africa but no any email from treatment advice then i got a email from canada .helen milne who is the founder of milne sjs society she promised me to another opinion and treatment to best doctors in world .she struggle alone for us.resulting 2 months she got appointment and funds for my kid.she gave me contact to patricia who live in leeds she helps me lot in uk .she gave me lot of contact for media and transport.she meet me and raise fund for ali. in uk joe way gave me media support tey gave me space my stroy in his website.after checkup in anehetia doctors said there is no hope for stemcell due to dry surface but doctors done his lower eye lid recontructive surgery in boh eyes .now my kid have no pain in eyes his both eyes eye lashes in correct.we still wait for some years then doctors done another operation for vision .i am thanks full for helps me.
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| Add Email to Story: | No |
| ID: | 100081
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Time/Date: | 10:36:12 AM PDT/ 03-24-2010 |
| Name: | Kathryn |
| Email Address: | EmailAddress@notprovided.com |
| Story: | I don't know where to start. I feel blessed that I didn't have the horrifying reactions that some people had, but sad and angry at the complete inability of the medical system to recognize SJS.
I was given Lamictal by my Psych as an adjunctive to anti-depressant on November 27,2009. By December 2nd I felt awful, thought I had flu. Fever (100.5) malaise, really bad joint pain, fiery sore throat, sore eyes. Found blisters on the back of my throat. Got on the internet. Realized this might be SJS so I stopped the Lamictal.
The next 10 days were spent in and out of emerg departments at the finest hospitals in my area being told I had herpes, chicken pox you name it. Finally diagnosed by a dermatologist. I ended up with mouth and tongue sores, vaginal and anal sores. Strangely, although I developed spots on my skin, they never blistered. But my insides sure did. I lost 30 lbs in 3 weeks when I developed diarrhea so bad I couldn't eat anything. I ended up on inhalers for tracheal damage. The doctor thought I had caught a 'bug' SOME BUG!
TO this day, since I didn't develop classic lesions, some dr's still don't think it was SJS. But the ones that matter are sure of it.
Fast forward to now:Here I am 3 months later, jaded by the medical system. I won't take anything except the meds I have always taken (thyroid etc). I won't take Advil and take a child's dose of Tylenol for menstrual cramps.
I deal with a Naturopath now, still 30 pounds lighter, I have to wear glasses PERMANENTLY due to a deterioration in my long distance vision. My periods are totally unpredictable (uterine damage?) and I still can't eat citrus or spicy (my two favourite foods) because I get sores on my tongue. I can no longer tolerate red meat, and I am completely gluten intolerant. I am on a special diet.
I won't let my children take Motrin/Advil and I am not so fast to take them to the doctor for antibiotics etc as I used to be. My dd is allergic to azithromycin, I never realized until I read here how serious that could be.
Still, I know that I was super, super blessed. Most of the doctors failed me, but God sustained me, and in time I will heal. And I got off SO lucky! |
| Add Email to Story: | No |
| ID: | 100080
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Time/Date: | 01:03:33 PM PDT/ 03-21-2010 |
| Name: | Marilyn Sprague |
| Email Address: | msprague68@yahoo.com |
| Story: | My daughter Kim at the age of 6 yrs. (she's 23 now) was diagnoised with SJS, at first they thought she had chicken pox and sent her home, 3 days later she was starting to die, took her back to the hospital and they thought she had been scalded in water for her skin was peeling off and she was bleeding. She spent 32 days in intensive care and 6 months after that in healing from the inside out, she bled from the inside., her fingernails fell off and she lost some of her hair.
The Dr.s at first told me she had a 25% chance of making it or would be blind if she lived through it. She has scars and I have nightmares to this day. 17 years ago this disease was unknown and only a few Dr.s had ever seen it. She was air lifted to Portland, Or. and put in intenseive care there.
She was on Dialitin for seizures and the side effect of this medicine was SJS, but we were not told this by the Dr. or the pharmacy. To this day we are caucious of all medicines given to her for she can still get this syndrome and once it starts it goes full blown. I am thankful that she lived through it. Thank You for reading my story. Marilyn Sprague, Klamath Falls, Oregon |
| Add Email to Story: | Yes |
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