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| Read stories results: Found 180 matches out of 180 records.
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| ID: | 100055
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Time/Date: | 07:37:34 AM PDT/ 09-18-2009 |
| Name: | LORI GAGNON |
| Email Address: | jsttennis@aol.com |
| Story: | I GOT A BUG BITE AND IT GOT INFECTED,I GOT PUT ON BACTRIM A SULFA DRUG.APPARENTLY I WAS ALLERGIC.I TOOK THE DRUG FOR 6 DAYS BEFORE I STARTED TO BREAK OUT.IT TOOK 4 DAYS BEFORE THE PROCESS WAS FINISHED.I ENDED UP IN THE HOSPITAL FOR A WEEK.I HAD SEVERE RASH COVERING MY ENTIRE BODY.I GOT SORES AND BLISTERS IN MY MOUTH ALMOST SENDING ME TO THE BURN UNIT,BUT I BEGGED NOT TO GO.SO I STAYED AT THE CURRENT HOSPITAL I WAS AT,BECAUSE I WORKED THERE FOR 17 YEARS.I HAVE NO HEALTH INSURANCE.I GOT BLISTERS ON MY FEET WHICH ARE STILL THERE A MONTH LATER.I HAVE NOT BEEN ABLE TO WORK.I AM 2 MONTHS BEHIND ON MY MORTGAGE.I HAVE A VERY GENEROUS ROOMATE AND FAMILY WHO HAVE BEEN THERE COMPLETELY FOR ME.AFTER 5 WEEKS I STILL HAVE HUGE BLISTERS ON MY FEET,I CAN HARDLY GET AROUND.I AM SELF EMPLOYED SO IF I DONT WORK I DONT GET PAID.I STILL HAVE THE RASH.MY SKIN IS PEELING,WHICH IS GROSS AND UNCOMFORTABLE.THE NEW SKIN UNDERNEATH IS TENDER.IT HAS BEEN A NIGHTMARE FOR SURE.IT HAD PUT ME IN A FINANCIAL BIND .IT HAS BEEN EMOTIONALLY VERY DIFFICULT.I GOT PUT ON STEROIDS WHICH ALSO WERE VERY HARD TO PUT UP WITH SIDE EFFECTS.I GOT STEROID INDUCED HIGH BLOOD PRESSURE,WHICH WAS VERY SCAREY.LAWYERS ARE SAYING THEY ARE NOT TAKING CASES FOR BACTRIM BECAUSE IT HAS A WARNING...IT REALLY IS TERRIBLE.SOCIAL SERVICES WONT HELP BECAUSE I OWN A HOUSE.I AM STILL IN THE MIDST OF THIS TERRIBLE SYNDROME WHICH I DIDNT EVEN KNOW EXISITED UNTIL IT HAPPENED TO ME.I HOPE THAT MORE PEOPLE BECOME AWARE OF THIS DEVASATING AND DEADLY SYNDROME.ALL THE DOCTORS TOLD ME I WAS LUCKY BECAUSE THIS CAN KILL YOU.GOOD LUCK TO ALL WHO HAVE BEEN DOWN THIS ROAD..AND GOD BLESS. |
| Add Email to Story: | Yes |
| ID: | 100054
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Time/Date: | 08:16:16 PM PDT/ 09-17-2009 |
| Name: | Danie Lowe |
| Email Address: | DanieDanger77@yahoo.com |
| Story: | When I was 13 years old I got my first period but it didnt go quite as planned. When I had my first menstrual cycle the first few days were normal but on the third day I got this odd itchy, stingy, tingle in the back of my throat and I felt it progress into my mouth. Moments later my lips, eyes, palms, wrists, legs, vaginal area, and neck began to itch and burn. I had noticed that all the places that itched were inflamming and turning into huge risen welts. By that night all of the welted areas became water filled blisters. I let it go for a few days thinking that it would pass or something but it just continued to get worse so I went to the hospital. I sat in the e.r and when I finally got back to see the doctor he didnt know what it was after running every single type of std test there was on me so he told me to follow up with my pcp and get referred to a specialist in dermatology. By the time that I did get to see the specialist my blisters had faded and all of my symptoms were gone so I just let it go. Now with it being my first year of having my menstrual cycle I was very irregular. So about 3 months had gone by since my last break out of SJS and I got my period again and sure enough 3 days into my period I got the odd sensations in my throat and it started all over again. Once again I went to the e.r and they said the same thing "to get into a specialist" and once again my symptoms werent very visible by the time I got into the specialist. I went to the hospital for the next few times it happened but I eventually gave up on going to the e.r because they always told me the same thing. I kept having these random break outs accompanied with my irregular period on and off for about a year and a half and it always seemed to get worse with each break out. My freshman year of high school I had another break out in October and this one was the worst yet so my grandmother got me to the hospital and demanded them to admit me and we were not going to leave until they found out what was wrong (bless my grammy). During the stay we went into deep detail and we noticed that my blisters occured in all the places that I had ever broken skin like previous places I had been scratched, cut, skinned my knees, elbows, etc. and we also recalled on me having a bladder infection just shortly before my first period and that I was prescribed Bactrim. This lead them to diagnose me with SJS and Erythema Multiforme. SJS because of the allergic reaction to the Bactrim and Erythema Multiforme because of the lesions forming on places that the skin was previously broken. They still do not know why it linked itself to my menstrual cycle but I have been on the Depo Provera Birth Control shot which has stopped my period completely ever since and I definitly do not take any medications unless totally and completely necessary and of course its only tylenol now. I am 18 years old now and havent had any complications since my sophomore year of high school when I took advil thinking it was tylenol and had a not as severe break out. Thank you for taking your time to hear my story =D |
| Add Email to Story: | Yes |
| ID: | 100053
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Time/Date: | 06:39:05 AM PDT/ 09-17-2009 |
| Name: | maria teresa berdugo puerta |
| Email Address: | EmailAddress@notprovided.com |
| Story: | Tengo 56 años, me dió el sindromé cuando en 1982, cuando tenía un hijo de 10 meses de edad,
Tenía un dolor en las articulaciones y me recetaron DOLOVID, empezaron a salir llagas en la boca que me impedian comer, y mi esposo rapidamente me llevo a la clinica. Realizando esta consulta en internet compruebo la suerte que tuve.
Estuve doce días en clinica, sin comer, la piel brotada, quemada, los ojos con secreción permanente , cada vez que podía los limpiaba, las personas que me visitaban no me conocian.
Apenas pude tomar algo volví a mi casa , con poco peso pero feliz.
La piel muy seca, los ojos con orzuelos , al poco tiempo fui al optometra y decidí usar lentes de contacto, me han ayudado mucho a evitar ardor , mas adelante me diagnosticaron chalosis en los ojos, como unas piedritas que molestan, el lente ayuda a que no roce con el ojo.
Se me cayeron todas las uñas, pero volvieron a nacer , no tan buenas como las originales, pero hay estan, solo la del dedo posterior al meñique de la mano izquierda se quiebra siempre, y su compañera del pie izquierdo apenas trata de nacer.
Cuando me dió el sindrome era profesora universitaria, trabajé 30 años, tuve otro hijo al año del sindrome.
Despues del sindrome he sido una person sana
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| Add Email to Story: | No |
| ID: | 100052
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Time/Date: | 09:14:32 AM PDT/ 09-16-2009 |
| Name: | Linda Rioux-Fleming |
| Email Address: | EmailAddress@notprovided.com |
| Story: | In December of 2007, I was suffering from a lower back problem, and the pain radiated down my left leg.
I went to my primary care doctor, he took an exray and said it was arthritis. He prescribed Celebrex. I finished the Celebrex and I still had the pain. I went back to the Dr., after telling him I am sensitive to medications, he prescribed Daypro and anti inflammatory drug. Three days into taking it, I woke up during the night with both of my palms itching. I got up, turned on the light and my palms were red, so I ran them under cool water which soothed them and went back to sleep.
The next morning I got up and began getting ready for work. I noticed my lips were swollen, having some medical experience, I knew this could be an allergic reaction. It was 5:00 am, so I figured I would go to work since I work in a hospital, if sysmtoms persisted, I'd go to the ER. At 9:00 I called my primary care Dr., I told the person who answered the phone my symtoms they transferred me to the nurse call line where I got the message that a nurse would call me back within 8 hours. By 11:00 that morning, my lips were still swollen and I was getting a rash on my stomach. I decided to go to the ER. One Dr. looked at me and said it's an allergic reaction and discharged me. I did not feel comfortable leaving so I told a nurse and she sent in the Dr. that just arrived on his shift. He looked at me and said perhaps I should see a dermatologist. I told him I had a good dermatologist, so he discharged me and told me to see her.
The next day, the rash had spread over my body and was itchy. My lips were still swollen. My daughter took me to my dermatologist. While I was waiting to be seen, my other daughter, who is a nurse did some research and called me to tell me to ask the doctor is I have Steven Johnson Syndrome.
Dr. Smith came into the room and I did not have to ask, she immediatey took one look at me and said "You have Steven Johnson Syndrome" we need to get you to a hospial right away. She then explained to me what it was.
She did not have admitting privleges, so she wrote a note, told me to go to the ER and be admitted, give the note to the doctore and have them call her. Which I did.
She overlooked my care since none of the doctors or nurses knew what it was. She saved my life. She prescribed large containers of a sauve that looked like vasoline but had steroids. she told me to rub it all over my body including up inside twice a day. Meanwhile she presciribed large doses of steroids via IV. She stopped in every day and called making sure the Dr.'s and nurses were supplying me with what she asked for. I was lucky, only one of the welts turned into a blister, we kept it moist with gobs of sauve.
I was in the hospital four days, Dr. Smith then said we need to get you home, too many germs int the hospital. I continued to use the sauve for several weeks and took steroids by mouth while visiting Dr. Smith once a week.
Dr. Smith saved my life. No one knew what it was, meanwhile it was progressing rapidly by the day.
I am very careful what I take now. Only Tylenol when needed.
I still have the pain in the hip and leg. I have had two injections into the facet joint and now go to physical therapy.
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| Add Email to Story: | No |
| ID: | 100051
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Time/Date: | 09:00:39 AM PDT/ 09-04-2009 |
| Name: | Janine Cuesta |
| Email Address: | janine_cuesta@yahoo.com |
| Story: | Its so amazing to know that I was also a victim of sjs disease which I never thought in my whole entire life..I was working in one of the beauty products then I suffer a cough in which my co - employees gave me a medecine that can release my cough but suddenly I feel itchiness to my eyes after I take 3 tablets every after meals... When I was at home I feel suffocated or which its hard for me to breath so my family rush me in the hospital withou my knowledge my whole body was blistering...Its hard for me to share all what happenings in my life because until now I can't imagine I can able to survive this diseases. And now I was suffering blindeness in y left eye.Help me for your prayers its my greatful happiness to show your empathy for my life..before its too late to make me blind I want to share this life of mine.. |
| Add Email to Story: | Yes |
| ID: | 100050
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Time/Date: | 07:06:27 PM PDT/ 08-26-2009 |
| Name: | Kelly Sampson |
| Email Address: | k3sampson@yahoo.com |
| Story: | http://abclocal.go.com/wtvg/video?id=6982578
The above link is my little girls story.Our local news did a story on her first day of Kindergarden, a day we didn't think would happen! Her name is Mikki, she just turned five. Two years ago She contracted SJS NOT being on any medication. They think it was from a virus. Please know that you are not aloneandtheir are other people out there that are or have felt what you are feeling right now. Good luck and know it will get worse before it can get better! |
| Add Email to Story: | Yes |
| ID: | 100049
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Time/Date: | 01:18:24 AM PDT/ 08-21-2009 |
| Name: | Drake |
| Email Address: | bertuzzi98@hotmail.com |
| Story: | I had been taking some medication for some acne on my face I am not 100% sure of what the name of the medication was. Anyways what had happened is that I had tried to use the medication (pill) and i tried it for about a week and i noticed that my skin would clear up a little bit but this was at the expense for some very minor irritation on my face and arms. I stopped the medication for about 2 days and then I decided I wanted to try to take it again and I wanted to start as soon as possible because school was coming up and of course what teen does not want to look acceptable in such a critical environment. So anyways I requested my mom to give me my pill for the night and she said she thought it would be a better idea if i did it in the morning. So I went to bed and woke up the next morning and had a shower. I asked for my medication and I had them and went to my room. I was playing my xbox and I noticed that the two fingers that I used to handle my medication had a red irritation on them. I continued to play and not any more than a half an hour later i could feel my legs were itching like i had several mosquito bites. I still disregarded this because of the fact that I was more into my video games to put two and two together so about 5 minutes later it was getting to my arms and becoming unbearable. I went to the washroom to see if putting some water on it would help and it did not work... I looked in the mirror and I saw my eyes were extremely bloodshot. I did not like this at all and I notified my mom about the irritation and she suggested we go to the hospital. I declined and sat on the couch waiting to see if it would die down or anything. It got worse... A lot worse it came to the point where I did not know what I was going to do because my whole body was itching and I could not get to every part all at once. I told my mom that we needed to go to the hospital. She took me immediately and the workers there realized my condition and gave me 2 pink pills (i found out later that they were some benadryl allergy medication and that they can be bought almost at any drugstore) at this point i was in a trance of severe itching and they put me on a bed and i continued to itch and itch and itch... After about 45 minutes the itching started to go away but the problem now was that my skin was swollen because i had been itching so much. I woke up a while later to blinding light which i did not remember seeing there before. I was sent home after taking another two pills but i could not open my eyes outside because my eyes couldn't handle it. I came home and it took me about 2 weeks fro me to feel better and back to normal but for a while i was not able to eat too much and i was bed ridden. I still have mild photosensitivity to this day but this took place about 1 year ago and I am still affected. Always be careful what you take and check side effects. Make sure you research it before you take it! |
| Add Email to Story: | Yes |
| ID: | 100048
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Time/Date: | 04:31:59 PM PDT/ 08-16-2009 |
| Name: | Linda lewis |
| Email Address: | kitties5@netzero.com |
| Story: | I had an infection and they gave me a sulfer antiboitic one pill and I had a very severe reaction wint to the emergancy room and they put me in the hospital 5 days and im home but im still very broke out I hope that it heals quickly so people dont look at me funny everyone I meet thinks im contasiuos or something not very fun im 48 and ive never had such a rash it covers 97 percent of my body . many prayers to everyone who has this I know how you feel. linda |
| Add Email to Story: | Yes |
| ID: | 100047
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Time/Date: | 01:26:01 PM PDT/ 08-14-2009 |
| Name: | Zach R |
| Email Address: | Zachkery999@yahoo.com |
| Story: | Well I'm not really sure what to write here. I was diagnosed with SJS/TENs late June in 2008. Didn't think I'd ever be writing a story about it. Ha, just can't get the flashbacks of the experience out of my head. Gotta admit, haven't gotten them out of my head since the hospital.
I was covered from head to toe with open blisters. Yet now a year later the majority of the scarring has become much less visible, still have a hard time looking my self in the mirror. Because every time I do, I see a remembrance of myself looking up at the mirror the second day I was in the hospital. ha, it's nothing to laugh about, but I looked like a monster. Like bubble wrap covered my whole body..
I was transferred to 3 hospitals within a day. One diagnosed me, another gave me the IVIG treatment, and the last helped me through the overwhelming pain for 2 weeks.
You can't explain the feeling of this.. I feel like crying every time I remember it. Like a death in the family, yet the death was a part of me. A part that I'll never get back. ha, have to admit. coming out of the hospital with covered eyes from the surgery leaving me blind for a week or two. Really left me feeling 10 years older then to me coming in 2 weeks earlier.
Yeah I don't want to drag this on, I could write about it for days.... |
| Add Email to Story: | Yes |
| ID: | 100046
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Time/Date: | 03:10:20 PM PDT/ 07-22-2009 |
| Name: | Sheila Pruitt |
| Email Address: | EmailAddress@notprovided.com |
| Story: | My father is very ill with liver disease and kidney disease. Not only that he was diagnosed with SJS. This has been an extreme problem for my father. We literally have to stay with him 24 hours a day when he is hospitalized because the doctors will give him medications that he is allergic to. We continously have these issues. It is not only so frustrating but terrifying that the drs will kill our father with medications.
We just had an episode in the emergency room where we had told the physician that the spots on his legs were due to a medication that was given to him in the hospital. The Dr made the remark " It is not due to SJS" my sister made the remark to the physican that we know the medication he was given and this was the reaction. The Dr was very upset and said " It is not and im not going to argue with you.". This is the treatment we get when we try to explain this Disease to Physicians that are treating our father.
My father went to a Wound care specialist today we took pictures with us of complications that arise with SJS. The blisters in the pictures are exactlly what my fathers legs look like. The Dr took a look and said no it is from fluid build up in his legs. "we know for a fact that the antiobiotic that was given to him in the hospital caused this reaction." but the physicians will not listen. We are dumfounded and have no idea what to do. We are looking for someone that has knowlege and experience with SJS in the houston area. If there is anyone out there that can help us please email us with information to medicalrevenue@aol.com. We are so desperate to find someone to help our father.
Thank you for listening and god bless.
Sheila (desperatly looking for help for our father) |
| Add Email to Story: | No |
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