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| Read stories results: Found 180 matches out of 180 records.
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| ID: | 100153
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Time/Date: | 09:42:27 AM PDT/ 09-17-2011 |
| Name: | Jerry Stabnick |
| Email Address: | sstabnick@wowway.com |
| Story: | I'm 75 years old now and have had sjs since I was about 3 years old. I have been offered the opportunity to have an artificial cornea lense implanted in one eye, and then the other.
If anyone know anyone who had this done and had SJS, please let me know how it worked out for you. Thank you. Jerry Stabnick. |
| Add Email to Story: | Yes |
| ID: | 100152
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Time/Date: | 11:44:02 PM PDT/ 08-26-2011 |
| Name: | Jessica |
| Email Address: | Jessicapech92@yahoo.com |
| Story: | I've been living with SJS for 5 years now, about to me 6 years. When I was 14 , I had an allergic reaction to a medication called Lamictal. I was in and out of the hospital for basically my whole life. My outcome.of this illness is scars and marks left from the skin peeling and watery eye. I get red spot out of no where. My eye water every minute. this illness has effected me so much in my life , I am not able to work or attend.certain activity.
Please, I need help in understand what I went through. I would be glad if you email me.back . Thankyou.
Jessica P. |
| Add Email to Story: | Yes |
| ID: | 100151
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Time/Date: | 06:09:50 PM PDT/ 08-18-2011 |
| Name: | Jennifer |
| Email Address: | Outdoormama1@gmail.com |
| Story: | July 9, 2011 I started feeling flu-like symptoms. I was achy, had a sore throat, and felt like I had a fever though I did not take my temperature. I was in PA visiting my family. I was taking sulfasalazine for one week prior to this. The dr. had told me to increase my dose after one week to 2 pills twice a day. I was put on sulfasalazine for ulcerative colitis (which the dr. wasn't 100% sure I had). I actually had a colonoscopy scheduled to take place the next week. Anyway, I continued to take the medicine even though I continued to have symptoms. On July 12, I felt slightly better and my husband and I took the kids to a water park. At the water park I rubbed water off my arms and skin came along with it....not a lot but it was strange, like I was peeling from a sunburn. As we left the water park because I wasn't feeling good, my husband told me my lips were blue. Still, I thought I just had the flu. I continued to take the medicine. The next day was my 36th birthday and I was actually feeling better except I felt like I had a yeast infection. I just thought that was what I had because I was in a bathing suit the day before. It all started going downhill the next day, July 16. I woke up with a rash on my stomach. I still took my medicine that morning. Thankfully, my husband decided to research sulfasalazine and told me he thought I was having a reaction and to stop taking it. Later that afternoon, my eyes burned and itched with conjunctivitis. And the rash increased up to my chest. The next day my face was swollen. We were suppose to go back home, but I knew I needed to go to the doctor. It was a Sunday, so I went to a Med express. The doctor there told me it was strep throat and put me on antibiotics even when I told her I thought it was a sulfa reaction. I knew I needed my family doctor so the next day we drove back home even though I could barely see and my mouth was starting to blister. I went home, saw my family dr. who put me on prednisone and eventually sent me to the hospital. I was in the hospital for 11 days and I am very lucky. Hopefully, I will not have long term issues. I have nightmares, am still exhausted, my arms still hurt from iv's, and I am spotted, but I think I'm ok. I am still scared it will come back. My eyes are ok, but burn occasionally. I want to be positive, but I think it is still too soon for me to have a good attitude. I'm mad that this could happen to anyone. I couldn't imagine how hard this must be for a child to endure....and how helpless parents must feel. |
| Add Email to Story: | Yes |
| ID: | 100150
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Time/Date: | 10:33:13 AM PDT/ 08-18-2011 |
| Name: | Laura Clark |
| Email Address: | EmailAddress@notprovided.com |
| Story: | On July 26th I was told that my loving funny happy great Aunt Edie was diagnosed with Stevens- Johnsons after being given Bactrum DS for a UTI. I am a nurse and immediatly started researching. Your website was one of the first ones that I actually found with any profound information. On July 30th I was able to make the trip to Litttle River SC to see my aunt. I found her in a small hospital with friendly staff but no one knew how to treat her. Her POA (non family member) left for a cruise knowing the condition she was in (long story). Hospital staff were kind but clueless on how to help or treat her. Just during the weekend her mental state declined and she no longer knew family or friends. I pushed for her to be placed in a burn center to treat her horrible wounds and pain but hospital staff could not assist me in my questions due to I was not her POA. It had already been planned by the hospital to send her to a Hospice Home. I was angry no one would talk to me no one would assist me in getting her help. She could not even ask for her pain medication much less make a decision to where she wanted to go. Found out the POA had had her to sign a DNR and obviously in SC this means no help at all!! I had to return home for work with no one to cover for me but was able to take the following week off. I was never allowed to speak with the doctor. I left messages and the doctor never returned them.
August 7th I was able to return what I found horrified me I found that she had basic wound care. No IV fluids and her meals came as regular meals. A week before we had taken her dentures out and I had told the nursing staff at the hospital she did not need to attempt to chew with dentures because I had found a large piece of skin from her inner cheek in her mouth. I first had them change the diet she struggled to eat with assistance and nursing staff states since she was a DNR they did not have to have someone feed her. Horrible Horrible. I fed her. My great aunt was dying in front of my eyes and no matter how much a stomped my feet and yelled there was nothing I could do. I made the decison to try and get POA for her some way I had to do something! On the way to visit my aunt on Aug 9th the sad call came in, she had passed away. How could this happen? Why was a woman that could have been given a chance not given the right to try and live. My story serves one purpose, loved ones must be a patients advocate ask questions and when you question something make sure you double check and do research. Get second opinions and never ever give up. My mother says that under Gods plan when it is your time nothing can stop his will. I just wish my aunt had a fighting chance this way my heart would more easily heal. I thank you for your site I went armed with printouts and information to the hospital but if fell on deaf ears. Thanks so much though for your helpful site,
Laura Brewer Clark great niece of the late Juanita (Edie) Northcutt Crowe of Little River SC. |
| Add Email to Story: | No |
| ID: | 100149
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Time/Date: | 05:25:38 PM PDT/ 08-17-2011 |
| Name: | tonya turner |
| Email Address: | tonya.turner74@yahoo.com |
| Story: | i found out i had sjs last august when i woke up and had 2nd and 3rd degree burns on my underarms in my mouth in my nose on my privites and on my feet. they rushed me to the burn center where i stayed for 8 days in icu. thought i was lucky then because they got it under controll. its back been battleing this for a year. im more scared now than i was when it first happen because im pretty much out of options. if i get sick in any way theres nothin i can take to help me. i was told not to take anything not anything and that is scary. i hope one day to be able to give at least 1 million dollars tryin to find out more about this problem and my will has already been made when i pass my body will go to sjs foundation in hopes of finding something out in my body to maybe safe someone else or maybe even many. thanks for listening. |
| Add Email to Story: | Yes |
| ID: | 100148
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Time/Date: | 10:11:47 PM PDT/ 08-16-2011 |
| Name: | Miru11 |
| Email Address: | EmailAddress@notprovided.com |
| Story: | I was diagnossed last week with SJS. I am 27 years old. I'm now at Memphis, TN on "vacation" and I became sick with sore throat, fever and blisters beginning in my mouth and progressively increasing and appeared inside my mouth, throat, ears, vaginal zone and thereafter rashes in my skyn similar to burns with lot of pain. I was prescribed with lamictal to treat my depression and humor change disorder...but this medicine generated a reaction which caused SJS, which as you may know is quite worst than any depression you may have. My case was treated fast I guess, (even if at the begginning doctors believed it was herpes). When I was hospitalized I was treated with iVIG and I believed that helped me. I recomend to ask for that treatment. Currently, I'm in a lot of pain taking morphine and other drugs as steroids. I can't eat or swallow well but I'm trying to be strong and get recover, even more now that I know how this illness works and how is affecting people and specially children. I wrote this for everyone who have or had SJS and wants to know that we are not alone and that supporting each others we may do it.. I have received also my family and couple's help. Keep togethervitnis important!. i am trying to fight. Let's pray for all together every night we might. We can do it together..we always be SJS's people but we are looking forward to fight it. Let's do it! |
| Add Email to Story: | No |
| ID: | 100147
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Time/Date: | 02:40:54 PM PDT/ 08-15-2011 |
| Name: | Sonia McAlister |
| Email Address: | auxfire@sbcglobal.net |
| Story: | In June of 2009, three of my Dr.'s put me on medication, while on Vacation in July, I developed a rash, the rash got worse as time went by in August, I had rash everywhere and by the end of september, I went to the ER with a horrible rash that I had since the latter part of June. The ER thought it was an allergic rash and gave me a prescription for a oral steriod and told me to continue taking Benedryl. Two days later the rash continues, by the weekend, I found myself back at the same ER. They gave me a shot of a Steriod, because I insisted they give me something. That was a Sunday and by Tuesday, my mom came and took me to a different ER after she called my Dr. and insisted I be seen, although I tried and couldn't even get in. By the time I reached the ER I had kidney failure and my skin was peeling from the top of my head to my toes. The ER Dr. told me that he was going to try and reverse the kidney failure and told me that he thought I had SJS, but he wasn't sure. I was in the ER from 11:00am to 7pm, when they took me to another hospital to be admitted for my kidney failure and that this hosptial was the best for that particular condition. While I was there, I saw a physician that diagnosed me with SJS and said if I didn't get better they were transporting me to San Antonio, TX to the burn unit. Thankfully, I had great Dr.'s and my kidneys are doing so much better. If would have been nice if when I first went to the ER, they were more aware of SJS and it's symptom and had treated me for it, but they didn't. I was in the hospital 9 days, and I still have some itching issues but am doing so much better now, even 2 years later. The Dr.'s told me I had a severe allergic reaction to the 3 medications that I had started on, I reported the information to the Dept. of Health in Washington, D.C., so that they were aware of the situation. The 3 meds were Cymbalta, Nuvigil and Oxcarbazepine. I have a Medical Resume that I carry with me, because I'm on so much medication and I have countless allergies and my Dr.'s are able to stay on top of what I'm on, and it's so much easier to not have them give me something that I'm allergic to. |
| Add Email to Story: | Yes |
| ID: | 100146
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Time/Date: | 08:20:26 PM PDT/ 08-14-2011 |
| Name: | Mackenzie Bruno |
| Email Address: | kenziie922@aim.com |
| Story: | My name is Mackenzie, I am 18 and have a 2 year old daughter. I had TENS and am extremely blessed to be alive. It all started on August 7, 2010, I woke up with a bump on my genital area that was very sore. I didnt think much about it until the pain worsed and I noticed two bumps in my mouth, I then when to the doctors late that saturday night. The doctor was convinced it was herpes and prescribed me a medication. The pain worsed through the night. The next morning i woke up to my daughter and couldnt open my eyes. I was in extreme pain and my body was covered in red painful bumps. My mom took me back to the same doctor, he saw me and advised I go straight to the ER, he suggested I could have SJS not herpes. I was diagnosed with Steven-Johnson Syndrome and my illness progressed quickly. After 3 days at lutheran hospital, I was taken to St. Joe to the burn unit. Within the first day I was on a ventilator due to the sloughing of my esophagus and I was put on a feeding tube. I lost 98% of my skin and everything that could go wrong did. My lung collapsed and took days to inflate. My liver had abnormal readings, and i was receiveing insulin every few hours. I had a staff infection in my blood, and they did plasmaphresis for five days. From being in the hospital i got c.difficile (deadly bowel infection). My doctor was sure I would not make it, but did everything he could to change that. They determined my TENS was caused by celexa. My mother was by my side through the whole thing, even though I didnt know what was going on. I was in a sedated coma because of the pain. I finally was released and taken to Lutherans rehabilitation center on September 10 and went home September 21, the day before my 18th birthday. I missed my daughters first birthday on August 23rd, but finally got to celebrate it when i got home. I had outpatient physical therapy for a month when i got home. Life will never be normal for me, my eyes are damaged and my vocal cords are damaged. I've had three surgerys, one on my eyes and two on my vocal cords (which were not successful). My voice is very raspy and quiet now. I have a great support team, and couldnt of made it without all the prayers! |
| Add Email to Story: | Yes |
| ID: | 100145
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Time/Date: | 05:54:02 PM PDT/ 07-22-2011 |
| Name: | Misty Farrell |
| Email Address: | charishedangel01@hotmail.com |
| Story: | My story begins right around July 7, 2011, that was the night we rushed my daughter Mika ( who had had a cough and a low grade fever for a few days) to the local ER when her fever had spiked to 103.4 degrees after at least three to four hours at the hospital they diagnosed her with pediatric pneumonia. they put her on amoxicillian for the infection. Then at her follow up appointment the following Monday July 11, 2011 at her family doctor's office they were concerned that the antibiotic that was given at the hospital wasn't enough so they added another one to the mix, never taking her off the first one. The next day she seemed better her fever broke and she was returning to her normal self. Then everything went south on Wednesday July 13, 2011. She presented with a rash and a high fever, once again she was rushed to the ER and there they told us it was an allergic reaction to the first antibiotic ( the amoxicillian) they instructed us to stop that medication but continue the other. Her father and I decided to stop both. Thursday went by without cause, then Friday July 15,2011 our world came crashing down when she once again at her follow up appointment with her doctor they wanted to consult with the other doctor that works at the same practice, and then both doctors felt the need to consult with the area children's hospital, who told the doctor to tell her dad that he needed to get her to their hospital ASAP. I was at work and raced out the door so I could be with her. We got to the children's hospital ER where they took us right back and came up with the Stevens Johnson Syndrome diagnoses. She was admitted to the infectious disease unit. We spent the first night getting settled into a regular room in that unit, then the next night after running test after test and poking and proding my little girl and making her miserable they moved us into isolation telling us it was precautionary because they had tested her for chickenpox. we spent the next four days in that room watching numerous doctors come in and look and stare at my daughter and her swollen eyes, blistered lips and body just because they had never seen SJS before ( it was a teaching hospital). They started her on IVIG treatment that Saturday and continued treatment until Monday night. Tuesday she was doing a little better drinking more on her own and eating a little here and there, mainly eating yogurt. Then on Wednesday she must have pleased the doctors enough to get to go home, because they discharged her on Wednesday July, 20, 2011. She is now at home and doing much better but she is still on pain meds, eye treatments, mouth treatments and of course having to put neosporin on her broken blisters and keeping them clean. We have contacted an attorney who says we have avery strong case considering she should still be in the hospital. |
| Add Email to Story: | Yes |
| ID: | 100144
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Time/Date: | 01:58:05 AM PDT/ 07-19-2011 |
| Name: | debbie williams |
| Email Address: | debbiewillimas23@hotmail.com |
| Story: | hi my name is debbie williams, and in aprilthis year my 3 year old son george began feeling a little unwell, he was laid on the sofa for most of the day, it was a wednesday.by wednesday evening he had a temperature i checked this and found it to be quite high,he had chapped lips aswell which he had had for around 2 days.the weather had been hot and i presumed he caught to much sun. I gave him the lowest dose of nurofen for children,2.5ml and it didnt touch his temperature so 5 hours later i gave him another 2.5ml .
he fell asleep and i wasnt too concerned thought hed maeybe picked up a bug and would sleep it off.I woke up thursdaymorning to find george in my bed which he never did.i instantly knew he was no better, he seemed very sleepy and was still really warm.i phoned the doctor who couldnt see him until 5pm that day.whilst on the phone and monitoring george i became aware that his lips were swelling and he had some puffiness around his eyes.his voice seemed muffled, and thick. i rang 999.the ambulance crew arrived but in the shoet time of me waiting for them i realised george was reluctant to sit up.he seemed very drowsy.the ambulance crew arrived and they asked if hed had anything different to normal. the only thing i could think was the nurofen as hed never had it before.they decided to admit george straight away.we arrived at A&E , my husabnd came down and grace georges sister, quite a few doctors saw george , but didnt really know what it was.although i think everybody suspected an allergic reaction to nurofen seen as though that was the only thing hed not had before.aswe were in A&E we began to notice 2 small sores appering on george just looked like scraped skin.george was admitted to the disney ward.Many tests were carried out and george was given antibiotics although not orally as he was having difficulty swallowing at this point.althoh he was still fairly alert and chatting a little.by the next morning (friday) george had a few more sores on him.the nurses said george wasnt improving on the antibiotics.geoge was also refusing to pass urine so had to have a cathetar fit.george pulled this out so had to go to theatre for one fit staright into his bladder. his penis had become serverly swollen and red.
bythis point friday night.georges skin had started to redden all over and we noticed more of these sores appearing.george was refusing to eat, but thankfully was still drinking.he was still fairly chirpy.then through friday night george took a dramatic turn, he was itching all over and became extremly aggitated .he was almost unresponsive.ibecame terrified.
the doctors at this point were treating george for scolded skin syndrome. by saturday morning the nurses decided to ring sheffield childrens hospital for adviceon gbeorges condition......and all of a sudden it dawned on me that tyhe doctors didnt know what they were treating and that georges condition had become critical.they informed us that they thought after advice from sheffield that they weretreating steven johnsons syndrome.i'd never heard of it.but they just kept reassuring methat he was fine and would be ok.they were brilliant im glad i didnt know what i know now or i would have had a breakdown.
by this point they had bandaged some of george to try and stop it sticking to the bed sheets.george began to not be able to see very well.they told us they were transferring george to sheffield via ambulance and that we wouldnt be able to go in the ambulance with him as they were managing a compromised airway!!!!!!!!!!!! so they needed a team of medical staff with him so for his safety it was best if we made our own safe way there. that journey wasthe longest of my life. i couldnt helpthinking that he wouldnt be ok when we arrived.when we did arrive the scunthorpe nurses were waiting for us and gave me a big hug and informed us he was on the burns unit where they could give him the skin care he needed.i needed some answers now and the doctors at sheffield told me how rare this condition was they also informed us that georges condition wasnow t.e.n.s syndrome which is the worst case of steven johnsons where more than 30% of the body is affected .by now all his face was affeceted andhe looked as though hed been in a bonfire!!!!! my heart broke! george couldnt open his eyes due to all the swelling and puss.that night (saturday )they transferred him to high dependancy! he was given immunoglobulins intravenously! and that was georges worst night.he was like a sleeping baby! he was so very poorly.the nurses told us that tens carried a one in three mortality rate! i prayed!!
by the morning george seemed to be picking up abit he sat up was listeningb to the telly and making small chit chat.he was allowed back to the burns unit.he had another 4nights of immunoglobulins each day improving i knew hed made it! he was so brave!the one moment that broke my heart was when daddy fetched george a new to cay and gave it to george and george said daddy can you tell me what colour it is?.he also asked if he was going to die?!!!!!!!
we came home with george the day of the royal wedding! he still had shedding skin which he didnt like. but was soing amazing .he had eyedrops and medicine for a week. and returned to school 3 weeks later.he loved the fame when he was on the local news and in the national paper.george took this horrific ordeal in his stride but me and ben new just how lucky he had been.everyday i thank god for him and the doctors and nurses who saved george! 4 months on and george is doingamazing he has just been sighned off fom the eye clinic with full vision! and doesnt need any follow up .he is my shining star and i truley believe the immunoglobulins saved him before it took hold compleatly! |
| Add Email to Story: | Yes |
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