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| Read stories results: Found 180 matches out of 180 records.
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| 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 |
| ID: | 100178
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Time/Date: | 05:09:38 AM PDT/ 08-12-2012 |
| Name: | Antony ripley |
| Email Address: | EmailAddress@notprovided.com |
| Story: | Hi All
This subject is so very true. I suffered Stephen johnson syndrome back when I was young, the last outburst being when I was 12. I am now 32 and not had an outbreak since. Doctors at the time didn't know what was happening or how to deal with it.
I seemed to react to penicillin and orange although it could never be really proved.
It usually started during the night where I would wake up with a crusty mouth and feeling sore all over. It got worse very quickly until I could no longer eat or use the toilet.
Became very uncomfortable and was hard to deal with at first.
The worse bit was doctors could really help or know what was going on, just time healed.
But now being 20 years on my body has seemed to deal with it and sort of grow out of it.
Seems even now that doctors don't understand it and they dont seem to know how to deal with it.
No one around me had ever heard of it and even my wife had never heard of it and that was just 4 years ago.
We very much need to make everyone aware so that people can understand it better and know how to deal with it with support etc.
Hope this helps anyone looking for answers.
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| Add Email to Story: | No |
| ID: | 100174
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Time/Date: | 11:47:16 AM PDT/ 06-02-2012 |
| Name: | James |
| Email Address: | JMCurrier6@gmail.com |
| Story: | A car accident sent me to an Ortho doc for neck pain and after PT and lingering pain I was given Celebrex to take and begin to go back to work on light duty. That was Jan 19 2011. I will never forget that day because it changed my whole life. I read the pamphlet that came with the sample starter pack and made note of side effects (something I have done for any medicine I have ever taken). Second day taking the pill I noticed my legs swelled a little when I got out of bed in the morning but figured it would just go away as my body began to tolerate the medicine. By the fourth morning I knew something was wrong when I put my feet on the floor. My legs swelled so much it felt the skin was going to split open and itched very badly. My arms and hands also were swelling along with my face. I called the Ortho and reported that I was having a reaction and they said just stop taking and call back when the swelling had went down. The swelling seemed to go down slowly but I developed a bad chest cold and really wasn't paying attention to my legs.
2 weeks later the swelling was still present and my right leg began to turn red and purple with the veins looking much darker. I began to have a hard time breathing, like I had fluid dripping in my chest, and my chest hurt so I went to the ER. 12 hours later I was told it was Vasculitis and to follow up with my PCP within 5 days. They could not find a reason for my chest hurting and blamed the fluid on the recent chest cold.
So my PCP told me to take a steroid taper and to come back in 10 days if nothing changed. 10 days pasted and my legs were getting worse. I could no longer feel my right foot up to my knee and the coloring was getting darker and showing on my left leg also. My PCP sent me to a Neuro for help with dx and of course that took almost 2 weeks to get a spot.
During this time I had a sense that something was VERY wrong and that if something didn't happen soon I was not going to be alive much longer. So I walked into the Neuro office and did all their questionnaire info and random Neuro tests then led to a cubicle awaiting the Dr. I could see from the look on his face he had an idea what was up and began to go over the history. After all this he said "Don't ever take another medicine containing Sulfa. It will kill you" he then said a milder case of Stevens-Johnson Syndrome. I was to go back the3 very next day to start treatment. He explained the sloughing of my skin on my legs and that it was very serious that they get right on this. The next day I had an IV put in and was given instructions on how to flush it, set up the drip rate and cleaning of the site. I was scared by all this giving myself the IV meds and everything but knew if I didn't I would be dead soon. I had this overwhelming crushing weight on me and my body was so tired.
I made it through the 5 days of the IV and basically ripped the thing out of my arm when I was finished. I noticed some improvement in my physical health but at the same time I felt strange things beginning to happen. Whole body charlie horses, burning and stabbing sensations every where that had swelled up. I could not think straight. Holding a conversation with someone was difficult because I no longer knew the meanings of the words being said. Urinating myself, sexual dysfunction, vertigo, sores in my mouth and throat. Muscle spasms that even with anti seizure meds would not go away. There was no answers for me from anyone. I was being told 6months to 1 year we will have you "Better" not back to normal but better than the present.
I am still having a lot of side effects from this SJS and am terrified to take any meds now. The neuropathy has never left and the worst part is my face. It gets so intense I get dizzy and fall down. It also affects my eyes and makes seeing a chore. The neuropathy is on both legs up to my waist, my left arm, my mouth, throat and stomach. My memory has not come back and I have a hard time remembering what I need to do anymore. I can barely walk due to the muscles in my legs getting weaker (the price you pay for the nerve endings finally dying) and every step is a 10 out of 10 on pain scale. I gave up shaving because it just makes the burning so intense. I am looking for help right now but I have no insurance and SSDI gives me just enough to not qualify for Medicaid. I know I can't pay for the treatment I am trying to obtain but I can't continue to "live" like this anymore. I just want 1 hour without pain....just 1 hour to not hurt anymore. I am still holding out for 1 doctor who will take me in and actually have some answers or offer me some form of relief. |
| Add Email to Story: | Yes |
| ID: | 100173
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Time/Date: | 06:38:15 AM PDT/ 05-26-2012 |
| Name: | Jasmine B. |
| Email Address: | EmailAddress@notprovided.com |
| Story: | My discoloration of my lips are a reminder that I survived. Survived what? A rare disease called Stevens Johnson Syndrome that can end deadly, meaning the loss of limbs, hearing and or sight, and possible cancer, and death. It was caused by an allergic reaction to Sulfa which became something worse. I was one of the lucky ones because I had read a story in a medical magazine when I was hospitalized at eight for a whole year. At first they took me to the burn unit since I looked like I had been in a fire, then realizing I wasn't they transferred me to intensive care.
The magazine had a very sad article about a woman who was thirty years old that died from the same disease. Doctors told my mom to prepare herself, that I might not make it. They gave her the choice to just let me go. However she would not give up on me. I didn't understand it back then, but around that time my mom had spent her times sleeping in an uncomfortable chair day in day out. She spent every waking moment with me I believe for the fear that one of those days could have been my last.
All of my skin, most of my hair, and all of my nails fell out. My tongue swelled up and I refused to eat because of the intense pain I was in. It felt like someone had placed my tongue in boiling water while smashing it with a hammer. My lips and eyes sealed shut every morning and I would have to force myself to open them causing my now sealed skin to tear followed by blood. They would have to test my blood and other stuff to study it since I was the only case of SJS in the hospital, and they had to fly people from around the world to help me.
Every now and then despite my condition I would joke a lot like when I ripped my lips open I joked to the nurse who had to shower me that my blood, "Tastes like cheetos". Then I was wrapped in layers head to toe of anti-bacterial gauze to prevent my infection from becoming worse. I also joked with the doctors and pretending to be a mummy since I looked like one. I remember when my family would visit, how many tears were shed, how I tried to see the bright side. One visit my sister and brother came and usually my brother bottled his emotions so it was a shock to see him break down in tears along with my little sister. I wanted to hug them and tell them that I would be okay, but my skin would peel off from the smallest touch and cause me severe pain.
Things in the hospital weren't too bad, I made friends with the nurses. There was a curfew on giving out ice cream and one nurse was sweet enough to get me some after the curfew. I remember making friends there, kids my age and I would watch them get better and leave. All of my friends left before me, and I began to wonder if I would get better. From then on my mom had became my only friend and would update me on what the family was up to. From what I heard, everyone spent their nights at one of my aunts house. She would then tell me how they would pray for me and I was happy that they were all together.
Soon I was well enough to be discharged but I would have to change my routine at home, instead of toothbrush and tooth paste I had to use a small sponge on a stick and some liquid bubblegum flavored teeth cleaner. I would have to stay out of the sun or become a prune, same applied with water but worse off than people who do get pruny if in the bath too long. As soon as I got home, I was welcomed by my entire family to a party they planned for me. From then on I became strong enough to go back to school and my normal life as a kid. Every now and then to this day I have to be cautious about the pills I take, staying in the sun too long(one reason why I wear jackets on hot sunny days), and to keep my skin moisturized to avoid drying up.
Well thats what happened. At first the skin peeling left me with spots like a cheetah, eventually they blended with my skin. My lip discoloration is the only reminder of the disease. Every once and a while in my darkest hours I reflect on that time in my life and how lucky I am to be here. I still can't believe how strong I was back then and now I realize that I should still be as strong now possibly stronger to overcome any obstacle in my way.
*On a side note I was hospitalized at CHOC(Childrens Hospital of Orange County)* |
| Add Email to Story: | No |
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