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| Read stories results: Found 180 matches out of 180 records.
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| 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 |
| ID: | 100165
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Time/Date: | 07:31:42 PM PDT/ 03-12-2012 |
| Name: | Daniel |
| Email Address: | Whiteseraph86@hotmail.com |
| Story: | I was 15 years old(in the year 2004 or so), on an ampicillin prescription for an ear infection. About 5 days later, my scalp started to get really itchy. I wasn't worried until the next evening when I itched to the point of drawing blood. I woke up at 5am the next morning, before dawn, and stumbled into the bathroom to find that my body was covered in enormous, blotchy patterns of red. Although I was really worried at this point, I simply went back to bed.
Four hours later, my entire body hurt so badly I hardly had the strength to stand, let alone walk. When I did stand, my feet immediately started to swell and turn purple. On top of that, perfect little white circles started to appear all over me. I yelled for my mom, and she flew up the stairs. I'll never forget what my mom's face looked like when she saw me. Since, apparently, I was going to the hospital, I was forced to begin an extremely painful descent down the stairs, and then to the ER. This was just before Christmas too :(
After I was admitted, things quickly went downhill. My body swelled enormously, and had turned an ugly red tint on top of everything else. I was given an IV to remain hydrated, but Lord in heaven, I will NEVER forget the nausea! It was absolutely crippling. But I digress. Soon, after lying in the bed, I didn't even have the strength, to take my shorts off. It was so humiliating to have my dad help me. Soon, my throat had started to swell shut, and my oxygen had to be monitored. I didn't have a clue as to what was going on, and neither did any of the doctors for a few days. I remember some specialist with an Indian accent coming in as a consult.
I was then told what I had to look forward to - A helicopter ready to fly me to a burn center in Kansas City to scrub off dead skin. I had no idea why, I was just worried about breathing through the night. Oh, and supposedly all my veins were leaking a chemical known as seren. And my white blood cell count was off the charts. At this point I started praying, not knowing whether or not God was going to take me home.
It wasn't until after the disease began to regress that the docs decided to tell me it was SJS. They said they didn't want to freak out my parents. It took about a year before I fully recovered, but my skin is still hypersensitive to a lot, more than ten years later. I now know how bad it could have been. Thank God I'm ok.
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| Add Email to Story: | Yes |
| ID: | 100164
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Time/Date: | 05:21:17 PM PST/ 02-26-2012 |
| Name: | Thomas |
| Email Address: | u1050633@unimail.hud.ac.uk |
| Story: | I am a 19 year old SJS survivor from West Yorkshire. I was diagnosed in school year 5, around the age of 9. The initial cause was never verified. I began with general flu like symptoms, fatigue, headache etc all worsened by dehydration because I was going through that childish stage where I thought that drinking wasn't important. My parents took me to the GP 3 times, where we were told to go home because it was just a cold. Then the rash came and blisters/ulcers formed, and my mum was worried sick. I went to school on the final day (something my mum has yet to forgive herself for), looking pale and ill, mouth caked in dry blood, and I collapsed outside the staff room. I was taken to hospital where it was determined that I was seriously ill. I took the care of several nurses to support the fact that there was something incredibly wrong, and then after a stream of doctors over the course of a week, a specialist finally suggested SJS and I was started on liquid Erythromycin. By this point, I hadn't been able to eat for two weeks, an opthalmologist was called in because my eyes were deteriorating, I was sleeping for most of the day and in pain the rest as the blisters were all over and the ulcers were all in my mouth and throat, there nurses had run out of veins in my arm to put a line in for fluids. A physiotherapist was called in because I was wasting away, extremely thin and no energy. After a slow recovery, and several months rehabilitation into life I was back at school. After affects are something people usually forget. I immediately needed glasses to correct the damage done to my eyes, and I have since never had the same energy or athletic ability (I was a cross-country runner), and have therefore never really been able to put the weight back on fully, particularly in muscle which had wasted away. Over the 10 years I have suffered from Extreme dry skin, Fungal head infections, horrendous razor rash and Folliculitis, easy scarring, athletes foot, excess sweating, extreme fatigue, Sleep issues, beginning depression, sensitive gums etc and recently ALL these symptoms have returned together and I am seeking GP attention this week because having it all is a joke and I can't cope. I have come to accept that SJS has fundamentally altered my skin and mental status, but that doesn't make it any easier. I have never met anyone with SJS and it's difficult to fully explain to everyone I know what happened and the effects I live with everyday; I think people see me as over-dramatic. Yes, I could be a lot worse, but SJS affects so much and so many people, which is why I tell everyone. If anyone wants to email me, please do. Thinking of all who have survived and all who have not. x |
| Add Email to Story: | Yes |
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