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| Read stories results: Found 180 matches out of 180 records.
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| 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 |
| ID: | 100172
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Time/Date: | 02:24:26 AM PDT/ 04-29-2012 |
| Name: | LCB |
| Email Address: | EmailAddress@notprovided.com |
| Story: | I was an active cyclist and doing very well in life and at the peak of my career.
I developed SJS from a combination of medications that my doctor prescribed for Uric Acid and Cholestrol. I was in the ICU for 18 days and had to be put on a ventilator. I went through the usual sloughing of skin and mouth ulcers etc and surrendered it all to Jesus, during my ordeal.
Through the prayers of so many people around the world and the Grace of our Almighty healer I walked out of the hospital after 22 days.
Through sheer determination and will power I was back on my bike a month later. However I did have severe dry eye conditions and damaged tear and oil glands and later developed complications that lead to a perforation of the cornea in my left eye. I went to several hospitals and finally went to LV Prasad in Hyderabad India.
They doctors suggested that I use the Boston Scleral lenses (PROSE).During the trial itself I found an improvement in vision in my left eye by at least 30-40 %. I am anxious to receive the lenses and hopefully get back to an active life.
To SJS patients around the world , have faith in the LORD and surrender everything to him. In our weakness HE is glorified. He will take care of everything. He is our provider and healer and has a purpose for us in life. May GOD be with you always ! |
| Add Email to Story: | No |
| ID: | 100171
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Time/Date: | 06:49:18 PM PDT/ 04-20-2012 |
| Name: | Armando |
| Email Address: | Sithreaper619@yahoo.com |
| Story: | My son has been suffering with sjs for five years. At it's worst I wanted to bury him and kill myself. This year at 16 he started smoking marijuana. He has had two eposodes this year, and this is the first time in five years he did not spend a month in icu with ivig's. Hepm is an imumosupressent that has worked for him this year. It never left his mouth to his skin, just sharing my hell. |
| Add Email to Story: | Yes |
| ID: | 100170
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Time/Date: | 06:12:00 PM PDT/ 04-20-2012 |
| Name: | Armando |
| Email Address: | Sithreaper619@yahoo.com |
| Story: | My son has been suffering with sjs for five years. At it's worst I wanted to bury him and kill myself. This year at 16 he started smoking marijuana. He has had two eposodes this year, and this is the first time in five years he did not spend a month in icu with ivig's. Hepm is an imumosupressent that has worked for him this year. It never left his mouth to his skin, just sharing my hell. |
| Add Email to Story: | Yes |
| ID: | 100169
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Time/Date: | 07:04:13 AM PDT/ 04-16-2012 |
| Name: | shenika thaxter |
| Email Address: | sturn247@aol.com |
| Story: | Hello, my name is Shenika Thaxter and I just had a recent encounter with ten syndrome due to my son being allergic to sulfa (bactrim). He waw recently discharged after 15 days, most of it spent in icu. My youngest son of two, Tyrelle Turner is 10 & was taken back and forth to Physicians Quality Care and the ER at Jackson General Hospital in Jackson Tn for a week due to a persistent headache and a high fever I couldn't break, which later resulted in a rash all over his body. He went to his regular drN dr john michael briley to check on the sinus infection that he had in which he was prescribed bactrim, march 9, 2012. He went to his dr march 20, 2012 for an xray of his sinus, but I did inform them that he had missed school mon due to fever and headache.on wed I took him to Physicians Quality Care for headache and fever, and dr stated that he had tonsillitis even tho he tested negative for strep and flu. He was given zithromax. I took him back to physicians quality care Friday due to headache, fever, and rash. Dr said it was an allergic reaction to medication, and to stop taking it. He was given atarax for the itching. Saturday the rash was even worse and my son was disoriented with labored breathing so I took him to the ER at jackson general, sat, march 24, 2012 & dr jackie taylor sent him home with a 103 fever and visible blisters on his mouth with diagnosis of scarlet fever even tho he again tested negative 4 strep and flu. Was given a tylenol and a prescription for erithomyocin. His condition worsened & his health rapidly deteriorated within several hours. I took him back to the ER again & we sat in the waiting room with visible blisters all over his mouth & neck, rash, fever, problems breathing, and disorientation for an hour and a half. Dr's didnt know what was wrong, so we were sent by ambulance to Lebohneur childrens hospital in memphis, tn. He was then diagnosed w/ten syndrome covering 75% of his body & was flown from memphis to arkansas children hospital in little rock, by helicopter to their burn center. I had to drive there since there was no room for me to fly with me. I was scared to death, ignorant to this syndrome, not knowing if my son would live or die. It was only 2 hours away from the hospital,and drove there with my older son and my boyfriend. We got stuck in traffic, so it took us twice as long. My son was admitted to the burn unit march 25, 2012, but was moved to icu the same day because he airway was so swollen, he had to be put on a ventilator and a feeding tube. We were not released until april 10, 2012, but he is still scarred physically, emotionally, and mentally. My son has never been hospitalized and had pretty healthy. This has been a scare to me and my family. I have been letting my community know and letting them jnow about the different drugs that cause this and the side effects we often miss and overlook. I have been unable 2 return 2 work since he is unable 2 return 2 school this year due to the wounds and the physical flaws in his skins due to the burns. I have had my utilities turned off as soon as I returned back home 3 days later. This has been so traumatic, but my son has managed to smile thruoughout this whole ordeal. Please share my sons story. Thank you. |
| Add Email to Story: | Yes |
| ID: | 100168
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Time/Date: | 08:46:30 PM PDT/ 04-11-2012 |
| Name: | shalonda wright |
| Email Address: | sparmstrong75@yahoo.com |
| Story: | I am 37yrs old now 11-30-11 i went to the emergency room got medicine, went home slept real good but i woke up like someone hadpoured s bucket of water on me with a red rash across my face and blisters in my mouth i called the er they told me it was a sign of fever, finally after the 3rd try of the er another hospital admitted me it took them a week to find out what was wrong, i was dehydrated losing my vision with fever of 104 and blisters in my mouth then on 12-08-11 i was was diagnosed with sjs and transferred to a burn unit, stayed there for 3wks where i was given all together 5pts. of blood because my red blood cells was being attacked by my immune system. I was released 01-01-12 where i'm still going back and forth to the eye dr, because i can hardly see due to the sjs, i'm also healing from muskoleletal disease, blisters still in my mouth and my skin is all left to heal on its on with God's help. Developing sjs not only affected me physically but mentally also, I have many sleepless nights, i have no funds to be able to see a dr. I'm trying to wait on disability feedback, this is very hard to deal with on my own especially with no answers or help |
| Add Email to Story: | Yes |
| ID: | 100167
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Time/Date: | 09:19:02 PM PDT/ 04-01-2012 |
| Name: | Misty Farrell |
| Email Address: | somebodysangel11@hotmail.com |
| Story: | Hello my name is Misty, I have a four year old daughter named Mika. Last July my daughter got sick and was diagnosed with pedatric pnemonia, she was given one anti biotic at the local emergency room. Three days later at her doctors office she was still not improving much, so her doctor prescribed yet another anti biotic for her to take along with the first on. We weren't really given any warnings about this second medication or it's possible reaction with the first( if any). Two days later we were back at the local ER because Mika had broken out all of a sudden with a rash and high pitched fever. The doctors told us it was an allergic reaction to the one of the anti biotics she was given. So we took upon ourselves to stop both that night. We took her to her family doctor again two days later for a follow up, by this time the rash had turned into blisters and the fever was back with a vingence, this is where we were told that she needed to be taken to Nationwide Children's Hospital right away( this was by a doctor who didn't normally see Mika). So we went up to Children's and rushed her into the ER where they took her back did tests and examines and then we were told that she would have to be admitted because she had been diagnosed with either SJS or Kwasukis Disease. I had never before heard of the first, and what I knew( very little) about the latter I didn't like. They moved her to an isolation room in the infectious disease unit. The next day Mika couldn't open her eyes because they had swollen shut and was crusted over, her lips was swollen with huge blisters and her mouth was covered in the same blisters, as was her poor little body. It was that day that I learned about this awful reaction called Steven Johnson Syndrome, it was this day that my daughter's life changed forever. We were told that the doctors at Children's had only seen one or two cases ( if that) of SJS and gave us little hope. This being a training hospital, my daughter was constantly being poked and proded with needles and nurses have to hold her down so they could get blood work, IVs , clean out her eyes, ect. She spent five days in the hospital( those were the longest days of my life, and hers) They allowed her to go home with strict instructions on how to care for the blisters she still had and on the medication regamine we had to give her, also how to care for her skin and bath her. It has been 8 1/2 months since the on set of SJS and we have come to find out that there she suffers lasting damage to her private areas and a number of other possible damage done to her little body. She still carries the marks all over her body from the blisters and has scarring in other areas where SJS attacks. She is slowly getting back to where she was before SJS but still has a long way to go. To think that all this suffering could have been prevented kills me. If only I knew more about the meds and what their side affects were. We were never told anything by her family doctor about the risks the drug carried, till the doctors at Children's pointed it out to us.. I am still struggling to find information about SJS and I am VERY interested in spreading awareness about it to every possible human being!!!! No one should EVER have to go what my daughter, and so many others have/ had to go through!! |
| Add Email to Story: | Yes |
| ID: | 100166
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Time/Date: | 03:21:27 AM PDT/ 03-17-2012 |
| Name: | Sherri Goldsmith |
| Email Address: | EmailAddress@notprovided.com |
| Story: | My husband was diagnosed with SJS two years ago by his pain doctor. Still learning everything we can about this and have told every doctor that he sees about this. I was surprised the number of doctors who do not know anything about this.
On March 5 he was admitted to the hospital for a wound on his leg that had not healed. This was after being on medicine to help. He developed a rash around the wound and his kidneys were showing signs of shutting down. He was being seen by a wound doctor and a wound surgical doctor, who he see twice a week now. When we went back to his pain doctor she was asking some questions about how he felted before he went in and while he was on the first round of medicine. He said that he noticed a rash and his lips felt like they were real capped but he was getting some skin when he would put something on them. His pain doctor said he sounded like he was having another flare and his time it was worse then the first.
I guess I am wondering what can be done to make doctor's more aware of this. Now we have to be careful because he can not take any medicine that is Sulfate base (his is a lot of drugs).
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| Add Email to Story: | No |
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