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| Read stories results: Found 180 matches out of 180 records.
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| ID: | 100187
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Time/Date: | 06:40:21 AM PDT/ 10-25-2015 |
| Name: | Sara |
| Email Address: | sjwalker1974@gmail.com |
| Story: | This is a story about my Mother. This nightmare for her began over 15 yrs ago when first she had pneumonia followed by ear infections in both ears. She was treated with antibiotics for over 2 years because of these infections. One day she shows me blisters on her back. Within a few days she was red from head to toe. Similar to maybe a 2nd degree sunburn. The nightmare spiraling from there. The burning and pain she had was indescribable. For years we toted her from doctor to doctor. No one Knew what she had. Her doctor finally gave her Xanax to calm the nerves. She still suffers today but not as severly. She now has neuropathy in her feet and legs that I beleive is also related.
Anyone know of what treatment could be available at such a late time?
The burning feeling still persist. The blistering and peeling stopped years ago.
This is such a long story. I couldn't possibly go into all of it here. I would take her anywhere I can if it meant she could be treated. |
| Add Email to Story: | Yes |
| ID: | 100187
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Time/Date: | 06:40:17 AM PDT/ 10-25-2015 |
| Name: | Sara |
| Email Address: | sjwalker1974@gmail.com |
| Story: | This is a story about my Mother. This nightmare for her began over 15 yrs ago when first she had pneumonia followed by ear infections in both ears. She was treated with antibiotics for over 2 years because of these infections. One day she shows me blisters on her back. Within a few days she was red from head to toe. Similar to maybe a 2nd degree sunburn. The nightmare spiraling from there. The burning and pain she had was indescribable. For years we toted her from doctor to doctor. No one Knew what she had. Her doctor finally gave her Xanax to calm the nerves. She still suffers today but not as severly. She now has neuropathy in her feet and legs that I beleive is also related.
Anyone know of what treatment could be available at such a late time?
The burning feeling still persist. The blistering and peeling stopped years ago.
This is such a long story. I couldn't possibly go into all of it here. I would take her anywhere I can if it meant she could be treated. |
| Add Email to Story: | Yes |
| ID: | 100186
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Time/Date: | 12:17:50 PM PDT/ 04-15-2015 |
| Name: | Fiona |
| Email Address: | fomahony91@gmail.com |
| Story: | Hi, I'm a 23 year old girl/woman from Ireland and it's April 2015. Recently I have had a lot of trouble with medication and I'm wondering if I have the initial symptoms of sjs. I feel it's been caused by paracetamol (I think it's called Tylenol in the US). Around a month ago I had tonsillitis which I took penicillin for. I was allergic to the antibiotic and broke out in hives. I switched to another antibiotic which was fine. I then took some paracetamol for the pain in my throat but it didn't relieve the pain and I got another different sore throat and sore mouth, I also had tingling in my genital area. This lasted a few days. I didn't realise it was caused by the paracetamol and took some again yesterday because I had a severe headache from a cold I have at the moment. Two hours after I took the paracetamol my eyes were burning. This morning I woke up with the same sore throat and mouth I had before and the strange tingling in my genitals. I am now worried that it will progress. I haven't taken any more paracetamol since yesterday so I'm hoping it won't get worse. I would like to thank everyone on this website for the stories. You are all so very brave and I would never have heard about the syndrome if I hadnt come across this website by accident! Is there anyone out there who have also had these symptoms? I believe I am suffering with sjs albeit a very mild form as there are no blisters so far. I am sincerely hoping that it stays that way! Anyone can feel free to contact me! Thank you again for this wonderful website. You are all amazing people! :) |
| Add Email to Story: | Yes |
| ID: | 100185
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Time/Date: | 11:13:46 PM PST/ 02-20-2015 |
| Name: | Mattox |
| Email Address: | EmailAddress@notprovided.com |
| Story: | In 2013 I was diagnosed with sjs from taking Bactrim . I was 25 years old and never had any health problems or have I ever been in the hospital besides giving birth to my children. I was taking Bactrim for mrsa which was not diagnosed by a blood test or any other form of test but by the symptoms I told the doctor. I had 3 staph infection in a 3 month period. I was 3 pills away from finishing when I woke up one day with blistering of my lips. I did have all the other symptoms. First I had a severe headache and later my ears begin to hurt to irritation to the sun. It felt like there was something in my eyes. I eventually woke up to the blistering of my lips which led me to the hospital. I was at the hospital for 2 days when they told me that I had to be moved to a burn unit where I can receive better care. I was in so much pain that I felt like I was gonna die. I was in the ICU burn unit for 1 1/2 weeks when I was finally discharged. The ONLY way I got through this was through God! I had many prayer go out for me. I had a severe case that I was later diagnosed with TEN. I'm currently 2 years in recovery and I still have scares on my body. God has blessed me with another day and another child. I do not have any after affect besides my scares and the occasional irritation to my eyes when I first walk outside. I'm truly blessed to be here. I would not be here if it wasn't for the prayers I received. Jesus is my lord and savior. At first I felt like I would never live a normal life, but I was wrong. If I could give my advice on how to get through this is to know with God by your side you can achieve victory to anything just believe that he loves us and we all have trials and tribulations that we must over come to really understand life and how valuable it is to love one another and to try to make each day better for ourselves and other by spreading the word of God for he is great! I will continue to pray for everyone that has and will go through this especially the children. |
| Add Email to Story: | No |
| ID: | 100184
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Time/Date: | 12:20:08 PM PDT/ 10-28-2013 |
| Name: | Kathleen Santiago |
| Email Address: | kathleensantiago410@gmail.com |
| Story: | Hello my name is Kathleen Santiago. I am 14 years old and I am a survivor of SJS. Stevens-Johnson Syndrome is a potentially deadly skin disease that usually results from a drug reaction. Another form of the disease is called Toxic Epidermal Necrolysis, and again this usually results from a drug-related reaction. Both forms of the disease can be deadly as well as very painful and distressing. In most cases, these disorders are caused by a reaction to a drug, and one drug that has come under fire lately is the cox-2 inhibitor Bextra, which is already linked to these disorders.
It all started on December 30th, 2012. I had very bad cramps so I went to the corner store and I bought a pack of Advil. I took the Advil and went to bed. The next morning I woke up with a rash which looked like the Chicken-pox. I told my mom and she said it would go away. That day I did what I had planed and didn't get any worse. On January 1st, 2013 I went to New Years party at a family members house, and my rash was fading away.
I woke up the next day with blisters all over my legs, arms, souls of my feet. I was so scared. My mom took me to the doctor and she treated me for what she thought was Scabies. I was then treated with Keflex (cephalexin) and a topical cream. The doctor told me I would get worse before I got better.
As the days past, I got worse. So on January 9th, 2013. I was taken to Saint Christopher's Hospital for Children where i was told "Nothing is wrong with her, she just has a rash." and was sent home. My mom refused to take me home and the police were called. My mom took me home and then the police showed up once again at my house because the hospital reported me as a missing child after we where asked to leave.
It was now the 10th of January and I was suffering for SJS not even knowing it. When my rash first came I did not have a fever or was sick or anything like that. It was just a rash for as far as I knew. Until January 17th I got very sick and was taken back to the doctors whom sent me straight the the hospital. By this time i was barley conscious, I was unable to walk due to the soles of my feet blistered. When I was put back into my mom's car I seen the blistering appear on my lips and down my throat. The worse as came. I was not able to talk by the time we arrived at the hospital. I was wheeled in by my girlfriend and signed in by mom. I was then took to the ICU/ Burn Unit. I was in the hospital for 6 week. I had several plastic surgeons, and infectious diseases specialist take care of me. While my family watched me slowly suffer from the still unknown rash. On January 15th I was diagnosed with SJS and I had no idea what it was. I was told i was not going to make it. The only thing that was left for me to do was cry and wait..... I slowly recovered with only scars and server Asthma. While hospitalized i have several attacks. I can not remember much of the days in between but I can remember having family there with gifts all the time. I was able to eat ice cream and that was about it. I am very lucky to have my life today, and i am thankful for it! When i first recovered and went back to school i was laughed at and called a "cheetah". My feelings where often hurt. I would cry all the time because I felt so ugly. As the months past my skin got darker from being in the sun. Once summer time arrived i was no longer scared to show my scars. They are beautiful to me, the are my life tattoos that will never fad, and i am proud to have them! Now that I am in high school all my friends accept me and love my skin. I am still the same person I was before I suffered SJS, and I will always be me.
My heart goes out to all the families that have lost or even seen a loved one suffer from this painful syndrome. God bless you all! I really would like to have a "walk for awareness" in Philadelphia Pa for the SJS survivors and those whom have lost someone to SJS. If anyone has any questions for me you can email me @ kathleensantiago410@gmail.com. |
| Add Email to Story: | Yes |
| ID: | 100183
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Time/Date: | 07:25:27 PM PDT/ 05-08-2013 |
| Name: | Tracy Manke |
| Email Address: | EmailAddress@notprovided.com |
| Story: | Hello, I just came across this page as I start my search for what happens now.. I am a SJS survivor, in 1974 I suffered from SJS when I was just 3 years old. I am curious if anyone knows if we have any related issues as we continue to grow into our adult years. |
| Add Email to Story: | No |
| ID: | 100182
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Time/Date: | 12:12:09 AM PST/ 02-04-2013 |
| Name: | gladys |
| Email Address: | sassieglad@yahoo.com |
| Story: | Contracted SJS from gout med7cation Allolpronol within 2 weeks of taking. My temperture was 102.7 kidney failure. I had all of the symstewm loss of nails hair burn spot over body. Lood count dropped to 6 (112 is normal) had blood transfusion. Hospitalized August 20121 for 17 days Rehab 28 days still recovering as I write. I would liketo find a support group I'm 77 years young. Oncwe you contratt sjs and recovering. Is it likely you can get this reatio again ifI donttake any othere medicatrion that I,m taking for my High Blnood Pressure? |
| Add Email to Story: | Yes |
| ID: | 100181
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Time/Date: | 09:02:13 AM PST/ 01-17-2013 |
| Name: | connie |
| Email Address: | EmailAddress@notprovided.com |
| Story: | Hello I was just told in July of 2012 that in October of 2006 I contracted Steven's Johnson Syndrome from a severe allergic reaction to taking a nerve pain medicine called "Gabapentin". I went immediately to the ER where I was given a Novocain Mylox mixture that I was to swish in mouth and then swallow. I had severe blister wounds throughout my entire mouth, tongue, throat and stomach that took weeks to heal before I could swallow again. I have had several outbreaks now on the back of left leg and at the center of low back every 2-6 months with sores forming around mouth or some inside the mouth and throat. It begins with a severe burning and aching throughout the body and a fever then comes the outbreaks. I have had tremendous weight loss, loss of appetite, severe kidney infections, and overall intense pain throughout joints especially when cold outside. It had caused some of my fingers to swell with intense pain. I have terrible hair loss and of all things my orthodontist has been scraping calcium deposits from the fronts and back of my front teeth since. I have been told the outbreaks I experience are spider bites and as well herpes or herpes zoster. All I know is that since the initial outbreak of 2006 I have lost over 100 pounds and my hair is very thin. I have no appetite and most nights can't sleep through the pain. From viewing others experiences from this I see that I am not alone.
I have also experienced a foggy haze film over the view of my right eye that distorts my vision and at times I have also become very dizzy and passed out.
If there is anyone who could give me some pointers to avoid outbreaks and to endure this never ending pain that goes with this syndrome that would be greatly appreciated. |
| Add Email to Story: | No |
| ID: | 100180
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Time/Date: | 08:20:52 PM PST/ 11-21-2012 |
| Name: | Stephanie hubbard |
| Email Address: | EmailAddress@notprovided.com |
| Story: | This is my SJS story, the whole thing.
It all started october 30th 2012, I was taking bactrim to cure a uti. The hives, flu like symptoms, and the fever started quickly. The swelling started the next day. I thought it was just a normal allergic reaction to the bactrim, I also had welts that started on the back of my neck.
on november 1st 2012, my face was so swollen. I began to have blisters devel...oping on my face, I had gone to the hospital where they gave me an I.V, and then they gave me a steriod shot in my hip. They then told me I would be better in 2 days, I was worse. On november 2nd 2012, I was taken into norman regional hospital where I was diagnosed with SJS. My brother, father and mother were scared that I wasn't gonna live through this. I was then taken into a room for an X-ra...y. The doctor told me he didn't find anything in my lungs nor in my mouth or throat. I was admitted that night. My mom was with me in the hospital, she was keeping me strong. She was praying to find a place to take me to get better, I was involved with at least 100 prayer chains. I was seen by a doctor who had seen 3 casesin 4 yrs, me being his 3rd case. I also saw a dermatologist who has seen several of SJS cases turn bad. She told me that the pink skin wouldn't go away until the spring. I was healed in 3 days, I was being watched over by those who loved me and are now guardian angels. My sister in law, as soon as she heardwhatI had, she looked up online and found out what it is. I am a firm believer in "those who don't remember the past are condemned to repeat it" I know what I went through and I also know that the only thing that can make this come back is a sulfa drug. The doctor who treated me, said that if I take a sulfa drug that I wouldn't have a mild case of SJS, I would have TEN. That's not what I want, so I am being extremely careful. |
| Add Email to Story: | No |
| ID: | 100179
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Time/Date: | 05:25:49 AM PDT/ 08-12-2012 |
| Name: | Antony ripley |
| Email Address: | EmailAddress@notprovided.com |
| Story: | Hi All
After reading some of these stories, my story seems very lucky.
I am sorry to all that have suffered and are still suffering for this syndrome. I hope I don't upset anyone who is still suffering.
The only thing I can say is it can go away and stay positive as much as possible and fight!
I remember not being able to do anything about it, just lying there helpless. Family support was the biggest thing.
My heart goes out to all that have an are still suffering effects of Stephen Johnson syndrome.
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| Add Email to Story: | No |
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