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| Read stories results: Found 180 matches out of 180 records.
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| ID: | 100076
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Time/Date: | 12:17:37 PM PST/ 01-19-2010 |
| Name: | Sara E. Ratliff |
| Email Address: | saraeratliff@yahoo.com |
| Story: | My name is Sara and In 3 months I'll be 21. I was diagnosed with Stevens Johnson Syndrome in February 2009. It hasn't even been a year and my life has been turned upside down! On February 1, 2009 I had symptoms of the flu so I went to the doctor. He said I had the flu and not to go back to work until February 3. On the way to work on the 3rd I passed out and hit a tree head on. I was given Lortab for the pain. On the 4th I woke up a little itchy, but nothing I couldn't handle. The next morning I was throwing up and my doctor said it was just because of the medicine so he gave me Darvocet. On February 6th I woke up and was covered from head to toe in hives. My doctor couldn't see me that day and told me to go to the ER. The ER doctor gave me medicine for the itching, and told me if the rash wasn't better by the morning to come back. Well, just my luck the next morning the rash was way worse and my eyes were very sensitive to light. I had to wear sunglasses all day and night while awake. That night I was hospitalized for my rash. That was on a Wednesday. That Saturday the on-call doctor told me I had Erythema Multiforme Major(SJS) and it was not looking good at all. It was to the point that I may not go home from this visit. My eyes became very dry. I was having to put eye drops in every hour on the hour. I began getting blisters in my mouth too. I woke up one morning as a nurse came in my room and I told her it felt like a elephant ws sitting on my chest. She told me it was anxiety. And I told her that I have had asthma for 6 years I think I know when I can't breathe. Well she brushed it off and didn't pay any attention to it. When the doctor came in I told him about my chest discomfort. What do you know I was wheezing and my lungs were drying out. I had to do numerous breathing treatments everyday. The hospital brought in a Infectious Control Doctor, a Opthamologist , and a Dermatologist. After a few days my rash started to fade some. I kept getting one step closer to being out of that hospital till the night before I was supposed to leave. My blood pressure dropped to 23/19 and I felt like death was upon me. The doctor came in and gave me medicine after medicine to rise my blood pressure to at least 100/80. After almost 16 hours of pushing meds into my body my blood pressure went up and stayed at a normal range. I finally got to go home on February 18, 2009. Not even a week and a half later my rash decided to come back for two days. Since then I have difficulty doing day to day stuff. I have no energy most days, my vision is horrible. I can't drive at night anymore. I wear sunglasses all day and night while I'm up. My skin itches no matter what I put on it. My hands and wrists get blisters on them everyday for no reason. My skin peels off a lot. I still get blisters in my mouth from time to time. Most days I'm so depressed I don't even want to get out the bed to do anything. But, I know that one day maybe just maybe there will be hope and a cure for this disease. So people just like me can live some what of a "normal" life. |
| Add Email to Story: | Yes |
| ID: | 100075
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Time/Date: | 08:43:27 AM PST/ 01-14-2010 |
| Name: | Joyce McCauslin |
| Email Address: | jlmccauslin@iu12.org |
| Story: | Seven years ago in Nov. 2003 I developed SJS-Tens from my head down to my torso. I spent 40 days in the burn unit in Baltimore. My reaction came from taking Advil. It left me with severe eye damage. Never in my wildest dreams did I ever think something like this could happen to me. My life was turned upside down over night. In those seven years I have been fighting to get my life back to normal. Getting the special contact lenses has been a big help, since I have repeated misgrowth eyelashes (trichiasis). Once a week I have a set appointment to get my eyelashes removed. I had several operations done to remove Keratinization of the mucous membranes of my eyelid, cornea scarring and severe dry eye syndrome. The only way that I can alleviate the severe pain is by wearing a pain patch. Also, I have light sensitivity. I put eye drops in every fifteen minutes . I flew to Boston several times to be fitted with the special contact lenses. I would recommend anyone to get them. The only downfall is they aren't covered by insurance. God saved my life three times and it's a miracle I'm not blind. It took me seven years to be able to use the computer. I had to go back to work because we need the health insurance. Sometimes it's very difficult to get through the day because of the pain. Praying is what got me this far. When I feel like I can't go on, I start praying. God has been so good to me. There is a reason this happened, but I may never know why. Maybe it was a wakeup call to make me be more thankful for what I have in life. I have three beautiful grandchildren and they couldn't have come into my life at a better time. I still have times I want to hang it up. Then I have to remind myself that there are so many things I have to be grateful for. I pray for everyone that this may have happened to, that God will give them strength to handle whatever they have to deal with. God Bless, Joyce McCauslin |
| Add Email to Story: | Yes |
| ID: | 100074
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Time/Date: | 09:26:45 AM PST/ 01-07-2010 |
| Name: | John |
| Email Address: | EmailAddress@notprovided.com |
| Story: | About three months before my 19th birthday, I was playing drums in a hardcore band...I had had a rather large fever blister...when playing in a particularly heavy moment in a song, I had struck myself in the face with a drumstick causing the cold sore to rupture pus and blood - both of which mixed and leaked into my mouth. I had gone home, feeling tired nothing unusual. But about 1 a.m. I awoke with mucous spilling out of my mouth, couldn't breather through my nose, was very weak and feverish. I had crawled out of bed and woke up my parents. They of course freaked out, I remember being in quite a state of shock as I looked at my hands covered in lesions...the worst crossed my mind. I thought for sure that I had contracted AIDS...I was a kid, I didn't know. My parents took me to the emergency room, the first doctor to see me wanted to start me on steroids. My parents contacted UVA and was told by there Medical Dermatology Dept. that if I were given steroids - death would be imminent. My father stopped them from using steroids, obviously. The second doctor to see me in the emergency room was from Nigeria...had he not been there, I would have been easily misdiagnosed with something or other because the doctors at this emergency room had never seen a medical case such as this and didn't know what was going on. I owe my life to such a strange set of circumstances, that one could only conclude it was most definitely God who had stepped in - there is no other explanation. I mean, what are the chances that one doctor, from Nigeria, in a small city (less than 100,000) would be able to accurately diagnose this condition? Anyway, I digress. At the time (summer of 1992) I had been one of two people out of the ten people recorded in ten years to survive this curse. Although I cannot stand drugs AT ALL, I am quite thankful that my family was there to press the morphine button, to help me to and from the restroom, to continuously run the suction machine for me DAY & NIGHT to keep me from drowning in mucous. I don't remember a whole lot (thanks to the morphine), but I do remember them being there, keeping me company, caring for me (more than hospital staff could, or would). I also remember the looks on peoples faces anytime I would go out in public (which was not often) after getting home from the hospital. I remember being on an oatmeal/liquid diet for almost 8 - 9 months after getting out of the hospital. But here I am now, almost 18 years later, shaking like a child afraid of the dark - or more succinctly what's in the dark, as I write this letter. Yes, I am alive. I made it, but to hear the doctor's version, I BARELY made it. To this day, I still very rarely take any kind of medication (even though I know my SJS was caused by a fever blister)....A few years later, after the first breakout of SJS, I had contracted a milder form known as erethyma multiform (not sure about the spelling). A new fear hit me then, because I was the father of a three year old little girl at the time...someone whom I love second only to Jesus Christ. But, again, I survived, rather unscathed this time. Now, today 1/7/2010 - I am to play a gig tonite, in a Christian metal band...and I have another fever blister - 18 years and five months later. |
| Add Email to Story: | No |
| ID: | 100073
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Time/Date: | 05:17:52 PM PST/ 01-06-2010 |
| Name: | Becki Conway |
| Email Address: | bccnw@hotmail.com |
| Story: | It all started when I went to talk to a fellow coworker, a doctor that I worked with regarding mood swings that I experience. He prescribed me Lamectil (sp) and said you will feel a diffrence right away. So I started taking it as prescribed. Two weeks went by, I never felt better. Then I started having chest pains. They were like contractions they come and the went for a day and a half. I didn't think anything of it at the time because the pain was not radiating down my arm. The second day I woke in the morning and my eyes were crusted shut. I had a cough and a tickle in the throat. I was tired but did not think nothing much of it because I have 4 children, which 2 of them are 2 year old twins. I was always tired.. Got dressed that afternoon to go to work early and was going to have the dr take a look at my eyes and be on my way to work. Dr was too worried about my chest pains so she did a ekg and chest x ray. Which was normal, but transfered me to the hospital via ambulance..arrive at the hospital and later discharged. Getting my dc papers and
then changing into my clothes I notice a red blister rash that covered my trunk, face and neck. This was not there when the rn give me my dc papers.. A sudden onset. Doctors were notified and a shot of benadryl was given and home I went.
At 4 am I awoke with blistery leasons in my mouth. Took advil for the pain and awoke at 7am with leasons moving to my throat. Back to urgent care where I was given inject of steriods (Solamedrol) and was told to stop taking the lamectil that the dr was sure I had sjs. Home I went again. Very fatigue at this time. I take a nap waking up in much pain as the leasons I could feel were making their way down my throat to the esophagus. Back to er when then I was admitted.
For 10 days the dr did not know what to do with me. Doctors and students come in to take pics as they have never seen sjs before. After 10 days I was transfered to a icu trama burn unit in another hospital. Where they then started the IVIG, feeding tube for nutrition, respitory, gyn, opthamology and dermatology was called in.
I have had 2 surgeries on my eyes as my corneas had blistered and peeled away. I suffer from stem cell defisiency, dry eye syndrome and my vison went from 20/20 to sometimes leaglly blind and sometimes 20/60. Just depends on how much I work my eyes.
My internal organs, such as my lungs and bladder were also affected. My lungs burnt and schluft. My esophagus was swelling closed. Was to be the size of a quarter and was the size of a straw.
My tongue burnt. Taste buds, roof of my mouth and gums all burnt Everything I ate for 2 months tast like shortning..I have a chronic cough. I have had no primary care doctor to follow up with,. I do see a cornea specialist. I am being fitted for a special contact lens that I suppose to defuse the light from hitting my scars on my eyes. Thus helping with improvement of sight and dry eyes.
My tear glands were destroyed during all this and my tear ducts were plugged with scar tissue.
I also suffered with leasons in the genital areas and rectom. Lost over half of my hair and finger nails lifting.off my nail beds, My body burnt inside and out over 50% of my body.
I am thankful to be alive. I love my husband and my sister for all the support they show me during this time. I would like to keep in contact with those who have suffered from sjs/tens. It is amazing how diffrent this disease affects each and everyone of us..Best wishes to all of you and GOD bless you for having to go thru this horribe event. |
| Add Email to Story: | Yes |
| ID: | 100072
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Time/Date: | 07:04:30 AM PST/ 12-14-2009 |
| Name: | Jessica |
| Email Address: | EmailAddress@notprovided.com |
| Story: | In January of 1995, I went to a local clinic in Nashville that was open on a Sunday. I had a sinus infection and went in to get an antibiotic. I was an active college senior and didn't have time for the sinus infection. I was given a sulfa drug that I believe was similar to amoxicilin. Within the next few days, I began to develop a fever and my glands became the size of softballs in my neck. I went back to the clinic and was told to continue taking the medication as I was going to get 'worse before I got better.' I also went to my university clinic and was sent home. On the last day of my 10 day prescription, I developed a rash over my entire body and spiked a fever. I was given a tube of benadryl by my university clinic and sent home. Luckily, my mother, a nurse in Atlanta at the time, had me get on a plane to go to her. By the time I arrived, less than 3 hours later, I was unable to stand and my fever was so high you could feel the heat through my clothing. My mother took me directly to the hospital to a doctor she knew. I was given clinical doses of antibiotics and released to my mother's care. My entire body blistered on the inside and out. All of my skin then fell off as did my toenails and fingernails. My skin was new and sensitive like a burn victims. I could not hold a pen for several weeks as my hands were so sensitive. My mother soaked me in oatmeal baths for days and kept me hydrated as I couldn't swallow due to the internal blisters. I feel incredibly lucky now knowing how much worse it could have been. I now wear medical alert bracelets at all times and tell people that I work with or travel with about my condition in case of emergency. Thankfully, my eyesight was not effected and I was able to make up my school work and still graduated from college on time. |
| Add Email to Story: | No |
| ID: | 100071
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Time/Date: | 04:33:17 AM PST/ 12-06-2009 |
| Name: | Karen |
| Email Address: | kareno@regionten.org |
| Story: | My story is about my Mom. This September she underwent knee surgery to remove a knee prosthesis that was infected. The prosthesis was removed and a knee spacer was put in that was filled with Vancomycin pellets to help combat the infection. She was discharged to home with IV Vancomycin and Cefepime for 6 weeks. After 2 and a half weeks she developed "Red Man" syndrome. After that she was in and out of the local emergency room 3 to 4 times before she was finally transferred to the ICU at Shands hospital in Gainesville. The doctors there did not believe she would make it through that first night for her reaction had progressed to TENs and she had over 98% skin involvement. She is 73 years old and two weeks before her surgery she had won first place in a horse show competition!
It is now four weeks later and she is still struggling to recover. We have almost lost her 3 or 4 times. She had a serious staph infection, pneoumonia, and most recently a blockage developed in her esophagus related to a loose piece of skin in her mouth that blocked her respirator. She has been medically sedated through most of this period and when she is alert she is pretty anxious as you can imagine. Our family is cautiously optimistic as her skin has healed over 65% of her body. Though we are horrified at what she has been through and hope that if she survives she will be able to live contently for the last years of her life.
I go to this website often for comfort, knowledge and seeing that there are other families out there going through this horrific experience. |
| Add Email to Story: | Yes |
| ID: | 100070
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Time/Date: | 06:28:24 AM PST/ 11-21-2009 |
| Name: | trish_fuller@hotmail.com |
| Email Address: | EmailAddress@notprovided.com |
| Story: | A Psychopharmacologist at MGH Boston was SO THrilled to be in a position to prescribe to me this "Wonder Drug," Lamictal, aka: Lamotrigine. She said alll of her patients were tolerating the drug very well, with virtually no side effects. She Started me out on a very low dose, which was to be incrementally increased weekly. She mentioned Stevens-Johnson Syndrome, that it was potentially fatal. And the likelihood of my contracting it was akin to being struck by lightning AND being bitten by a shark the same day.
So, I guess I felt pretty safe taking the medication. BIG MISTAKE!!
Sitting outside in the brilliant sunshine on the deck of the new Island Home ferry, after about ten minutes, headed for the Oak Bluffs dock, I looked down to see my arms, neck, and shoulders erupting in blisters.And I felt warmer than the weather would dictate.
Flying into the nearest restroom, I got the full picture; the blisters had covered my face as well. Knowing I am part Wampanoag, and that I don't suffer these merciless "tourist burns," I immediately called MGH. I was instructed not to get off the ferry, but to turn tail and head straight back to Boston, and MGH.
It seems that I had both won the lottery and gotten that shark bite: I had the dreaded Stevens-Johnson syndrome.
After a day and a half of injesting every antihistamine and antiinflammatory, as well as enduring a 103 fever, it was decided by the med staff that I might, in fact, live to see another day. The blisters itched like hell, but hey, I could have been dead in a few hours from this syndrome!
I suspect the number of cases has been manipulated (downward). Noone should take this medication confidently that the side effects are SO rare that they have nothing to worry about. And I have swum with sharks. A thorough investigation is in order.
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| Add Email to Story: | No |
| ID: | 100069
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Time/Date: | 03:24:12 PM PST/ 11-15-2009 |
| Name: | Suzanne Bell |
| Email Address: | sebell1862@aol.com |
| Story: | On Thursday, October 8, 2009, my 17 year old daughter, Karyl, began complaining of itchy eyes while at school. She hadn’t taken any over the counter or prescription medication or had worn or eaten anything differently. Upon coming home that night her eyes were swollen but we thought it could have been due to the contacts. That night, she awoke not feeling well and by morning her face around her eyes and mouth was swollen.
I took her to the doctor and they treated her with Benedryl and antibiotics but she began to run a high fever and a rash began to develop. We were sent home and later that evening, her tongue began to swell. Fearing where this was leading we took her to the emergency room where she was immediately diagnosed with SJS. She was admitted to the pediatrics unit and kept in isolation until they could determine what had caused this reaction. All of her medical tests came back negative. There was no reason for this. We went through every possible allergen and couldn’t come up with any ideas except something at school. The school was dealing with a severe mold issue and was in the process of removing materials that tested positive for all sorts of spore types. They were also spraying chemicals within the classroom areas to disinfect the area of the school. The doctors could only tell me that in their opinion, it was a contact allergen that she had been exposed to within four hours of onset.
Needless to say, I spent 17 days in the hospital with my daughter. The blistering covered her body especially her face and chest. Her body, arms and legs were less affected. Her eyes were severely affected with scratches to her corneas and blistering as well as blistering to her mouth and her lips. The eye specialists and cornea specialists were in to see her at least twice a day during our stay constantly working on her eyes and putting drops in.
Although her skin is healed, there is discoloration. She is very light sensitive and must wear sunglasses inside and outside. She still tires very easy and struggles to use her eyesight. She can see however it is blurry and we are constantly putting drops in her eyes to keep them hydrated. We have follow ups with the eye specialist and everything else we’ve been told will take time.
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| Add Email to Story: | Yes |
| ID: | 100068
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Time/Date: | 07:41:31 PM PST/ 11-12-2009 |
| Name: | Evie |
| Email Address: | EmailAddress@notprovided.com |
| Story: | I was diagnosed with SJS June 25 2009 after having a reaction from Lamictal. I had no idea what was happening to my body because i was told I may get a rash that looked like a sunburn, instead i was covered in blisters. I wasnt put in the hospital right away but instead given oral steroids. Three days later the blisters had traveled down my esophagus and i couldnt swallow. I was treated first in Gloversville and then transferred to Albany Med where i stayed in ICU for 8 days. After getting out of the hospital i had another reaction from the Nexium they had me on. It was probably one of the hardest, worst experiences of my life and i'm glad i made it through ok. I now try to tell everyone i can that this kind of thing happens. I had no idea what SJS was or heard of it until i ended up with it. Hopefully someday they can find a cure. |
| Add Email to Story: | No |
| ID: | 100065
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Time/Date: | 06:42:30 PM PDT/ 10-14-2009 |
| Name: | Pamela Hudson |
| Email Address: | EmailAddress@notprovided.com |
| Story: | I am 37 years old, I have multiple myeloma(cancer of the bone marrow), and kidney failure. I recently was diagnosed with sjs and this was the first time I had ever heard of it. One Friday I was at home with my two children, ages 8 and ten, when all of a sudden my mouth and lips began to feel very irritated. I really did'nt think much of it that night I thought it was somthing that I had eaten. The next morning when I woke up I was swollen and had red spots all over my body which progressed rapidly over the day,I also began to run a fever. The next day I decided to go to the ER to find out what was going on with my body. While in the ER I was told that I had an drug reaction and was sent home with a cortisteriod. I stayed home for a week taking this cortisteriod that had been prescribed to me and hoping this would all be over soon, but it only got worse. That following weekend I noticed my skin beagan to just peel off. I had made my mind up then that I was not going to just sit around and hope anymore, It was time for my Dr. to see what I looked like. Monday morning instead of calling my doctor I decided to jsut show up and demand that he get me the treatment that I needed. I was sent to see a dermatologist for his opinion of whether or not it was sjs and it was. That day I was admitted into the hospital (not the burn unit or icu) for treatment, there I stayed for three days. Since then my skin has really improved, however I do have some permament scarring on my body. I though my case was not as severe as others I have been told and read about, I do realize that sjs is no laughing matter. I pray for all that has gone or is going through this. |
| Add Email to Story: | No |
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