 |
 |
 |
 |
| Read stories results: Found 180 matches out of 180 records.
|
|
|
| ID: | 100051
|
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
|
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
|
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
|
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
|
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
|
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 |
| ID: | 100045
|
Time/Date: | 10:14:13 AM PDT/ 07-18-2009 |
| Name: | nenoahwa wilson-lynch |
| Email Address: | noahlyn@hotmail.com |
| Story: | i am looking for anyone that has SJS and LUPUS and what is happening with you, or any articles on that topic. ive had lupus for 13 years, in 2000, i was given an anti-biotic, i had my first episode of sjs, started as a rash, then started to look like a sunburn, then blistered, my husbands dr had had sjs and diagnoised it as soon as he saw me ( i was very lucky) that was followed by 4 more episodes over 8 years, covering my body. and many spot burns inbetween and the spot burns continue even though my last full burn was 2007. because i keep burning, they are not sure what keeps triggering the sjs and there was a theory that because i had lupus, the lupus was agravating the sjs to repeatedly burn me. so, has this happened to anyone else? please email me if you have in information on patients with lupus and sjs or are one yourself, thank you. |
| Add Email to Story: | Yes |
| ID: | 100044
|
Time/Date: | 07:54:36 AM PDT/ 07-11-2009 |
| Name: | CHRISTOPHER JORDAN |
| Email Address: | cindyjordan@rockertmail.com |
| Story: | When Chirs was about seven and a half years old , He was on Dailtin and started geting sick. so I called the doctor to ask why chris was geting sick on his medication. he told me if chris could take a hot hamburg out of the pan after cook, and put it in his mouth. thats how hot his medication was when he took it. I just was so upset after I found that, so I got and a another doctor advised. so he goes and added another medication in to what chris was taking, it was'nt two weeks later when chris was put in the hosptial with sjs. he almost die but with everyones prayers chris made it. he may be blind but he is still. I thank my Jesus every day that our son is alive. if you would like to talk call me at 812-670-0504 ask for cindy |
| Add Email to Story: | Yes |
| ID: | 100043
|
Time/Date: | 05:36:08 PM PDT/ 06-28-2009 |
| Name: | Shernie Wilkes |
| Email Address: | EmailAddress@notprovided.com |
| Story: | My journey began with a medication called Lamotragine, in April of 2008. I had not reached the target dose before I found myself in the hospital. As most of the stories here relate, I was a mess and nearly died. In the little city of Walla Walla Washington, my physicians were quick to identify, collaborate, and treat me. I spent more than three weeks with multiple IV substances flowing into me, all the while losing more and more skin. I could not see, and anything that touched my lips burned like I could not ever have imagined! Enough said about that. After I was discharged I had 3 months of physical therapy to help regain strength and balance, and numerous eye appointments. I was unable to return to work until January of 2009. I had to give up my choral group due to intense scarring of my throat and esophagus, and I won't go into the classical piano playing.
At this time I am 14 months post incident, and have begun to reclaim my life, somewhat. I still run into things, have difficulty reading and watching TV, still cannot walk long distances, or spend more than a few minutes in the heat or sun. I am fearful of any new medication my doctor suggests and silently panic whenever I feel a tingle in my lips. I continue to exercise when I can and try to live as though I will be healed and well. There is ONE who has all healing, and I have HIM in my life to guide and watch over me.
Oh, yes, today is June 28, 2009, my name is Shernie, and I am 53 years old.
|
| Add Email to Story: | No |
| ID: | 100042
|
Time/Date: | 02:21:24 PM PDT/ 06-28-2009 |
| Name: | Donna Johnston |
| Email Address: | EmailAddress@notprovided.com |
| Story: | I was diagnosed with SJS 10 years ago after taking Metronidazone (flagile) for a womb infection. I took a terrible reaction in my mouth to this antibiotic and was on a drip in the hospital for a week. My mouth eroded and my tongue attached itself to the roof of my mouth. I was very ill and in extreme pain. I remember writing on paper to my husband and parents that this was the worst thing ever. I got over that mentally but physically my mouth has never recovered. I endure numerous ulcers and bacterial infections a number of times a year and recently it has been getting worst.
I emigrated to Australia in Jan this year and you can emagine the stress - coming to the other side of the World (I came from Scotland) to live in the heat. I suffer from Anxiety (from a post-traumatic stress incident) and feel that mentally this was a major challenge for me to cope with. But I have managed to get this far. I have lost count of the times my mouth has got me down and how painful this has been. You see, my anxiety always came first - self awareness was keeping me from dealing with this SJS issue.
3 weeks ago I was diagnosed with a bacterial infection in my mouth after having thrush which I get regular due to the SJS. I was given steriods and antibiotics. Everything started to clear up within 24 hours. Unfortunately 6 days ago the same problem accured again in my mouth and I am off to the Drs tomorrow morning again. I have swollen inner cheeks with a white line which looks like I constantly bite it and just above that at each side I have a lump which sticks out, very red and painful. The left one always goes back in and the right one gets a white ulcer looking thing on the end and I cant eat or drink, even my own saliva hurts. I can feel the pain through the wall of my mouth. Usually I get at least 3 or 4 major ulcers that are so deep my tongue can feel the hole but I dont know what the lumps are above the white line. As I said I havnt really dealt with this due to dealing with anxiety and being on medication for that. I know having ulcers is stress related and it doesnt help having a mouth condition.
The only funny thing that comes out of this is that when I was diagnosed with this condition I started laughing because my husband is named Stephen Johnston... |
| Add Email to Story: | No |
|
|
 |
 |
 |
 |
|