 |
 |
 |
 |
| Read stories results: Found 180 matches out of 180 records.
|
|
|
| ID: | 100062
|
Time/Date: | 02:42:27 PM PDT/ 10-09-2009 |
| Name: | roxanne eberhard |
| Email Address: | EmailAddress@notprovided.com |
| Story: | I have the distinction of being diagnosed by the head of Stanford University in the early 70's as the second known case in the history of California .Pictures of me were pubished in medical journals due to the rarity and severity of my condition.
My parents had no resources or experts to talk to , there was no internet to log on to.They could only stand by my bed and watch as a stream of doctors and interns paraded by to to gawk at me and take pictures as I lay incased in refridgerated sheets ,hooked to a myriad of machines .
What I remember most was being at my grandparents and being sick with what they thought was a heat rash. I remember my uncle comming home from work one day and giving a great big hug as my grandmother expressed her concerns. Then I remember being in an ambulance deperately wanting a drink of water and my mother telling me I couldn't have one.I learned later that I couldn't because my throat was almost completely swollen shut .
My next memory is having my arms tied to the bed so I wouldn't scratch myself raw and then as the dead skin started sloughing off pulling the top layer off my entire palm.
I was 5 years old. |
| Add Email to Story: | No |
| ID: | 100061
|
Time/Date: | 12:07:32 PM PDT/ 10-07-2009 |
| Name: | Laura Singer |
| Email Address: | EmailAddress@notprovided.com |
| Story: | In 1980 my brother died of Steven Johnson Syndrom and it still as fresh as it was so long ago. My brother was a healthy young 26 year old man with his life ready to live a head of him but it was cut short by SJS. I always thought that it would of been better if her would of been struck by lightining so I could better understand what had happened to him. I was 18 years old at the time I herd my big brother had been admitted to the hospital due to a reaction he had to a sulfur drug he had taken to clear up a blader infection. He was addmitted to the hospital with a rash and on day 5 of his stay April 29th 1980 at Jackson mormioral Hospital he was in a coma and to die the next day. He was in the burn ward and was on morphine for the pain. When he died our family wanted to donate any body part that may be useful to someone but he had nothing left all of his vital organs from his skin to anything else was burned beond use.
He also suffered a horible death and I so many times ask why did someone so kind and loved have to suffer so much? It is hard to understand this rare reaction and I still do not understand and ask for answers but I don't know if I will ever have them. When I read Julie's story I thought to myself they are the lucky ones to still have their loved one with them but it must of not been easy to go through what they had to endure. I am pleased to have found this website to help me better understand SJS and also gain the support I have needed all these years. |
| Add Email to Story: | No |
| ID: | 100060
|
Time/Date: | 09:02:41 PM PDT/ 10-01-2009 |
| Name: | Paula |
| Email Address: | EmailAddress@notprovided.com |
| Story: | I had a flu vaccine last Thursday. I was given a double dose in error. I developed large sores on my lips, left cheek and right temple. my trunk back and chest broke out with red and purple circular wheels and the pain and inching. I could not touch my skin. I saw the internal medicine PA "I was asked what do you want me to do" After the sarcastic answer of how about putting the fire out on my body, she said she would give me attarax. Guess what did not work, I was having fevers, chills and the spots growing and growing. I went to eat breakfast Tuesday morning and when I ate one bite of toast. I thought I stuck razor blades in my mouth. My mouth was bleeding. I called the dermatologist, they said only the PA cn see you, I thought again, I thought I was on fire,`so i went on in. When the PA saw me she said this is beyond my scope I must get the doctor right away. Holy crap was his comment and I was told I had Steven Johnson's syndrome. I am a medical provider I found myself in unfamiliar territory. I received 2 injections steroid, hospital but I want to go home, the doc gave me a few hours to see if I would respond. I was scared of catching a nosocomial infection that would kill me. I am on the mend of this horrible experience. I have had this condition 3 times. I have face scaring and my trunk (back and front discolored and disfigure). I was told be sure my affairs are in order, because we know now the meds but we do not know the future. I am grieving. I am sad. angry, and going to be good one day at a time. |
| Add Email to Story: | No |
| ID: | 100059
|
Time/Date: | 12:34:32 PM PDT/ 09-29-2009 |
| Name: | Michelle Rochon |
| Email Address: | michellerochon1996@hotmail.com |
| Story: | I am having a difficult time with this. My 6 yr old son was diagnosed on 9-16-09 with an ear, sinus, and upper respiratory infection. The doctor prescribed azithromycin for him to take. He started it that day, and later in the evening i noticed the palms of his hands were red. I thought dry skin since we live in Alaska and it is getting to be winter and starting to get cold. I put lotion on him and sent him to bed. The next morning he was complaing of his hands burning. They were still red and warm to the touch, i put more lotion on them and sent him to school. I gave him his second dose that evening and within a 1/2 hour he started complaining his hands were burning. I tried to soothe him by putting ice packs and such on his hands. We woke up the next morning and his hands were not getting better. I called the pharmacy and spoke with the pharmacist and she said it sounded like an allergic reaction to the antibiotic, albeit presenting oddly. I called the doctor and they switched him to bactrim and added the azithromycin to his allergy list. His hands, knees, and toes/feet are being affected. The skin is coming off and although it isn't red underneath like all the pictures i've seen it is coming off like he was scalded. The doctors up here aren't the greatest and i am scared that they will miss this diagnosis. He has an appointment tomorrow morning and i have been doing my research on this and all other related disorders and SJS fits the bill except for the rash all over. Can anyone tell me if they had a mild case of SJS? Thanks!!
Sincerely, Michelle |
| Add Email to Story: | Yes |
| ID: | 100058
|
Time/Date: | 11:10:35 AM PDT/ 09-28-2009 |
| Name: | Steve Harrison |
| Email Address: | EmailAddress@notprovided.com |
| Story: | I got sjs during my finals at university. I was 40 at the time. I had fllu and fever symptoms. I finished my finals in the university horspital. I then contacted my doctor who sent me to the local hospital. they took a look at me and told me I had flu. Fortunately, I re-visited my doctor,who had a student working in the surgery. He diagnosed sjs and I was hospitalized immediately. I had blistering in all soft tissue areas and a fever the continued for seven days. The symptoms eventually abated and after three weeks I was discharged. On a follow-up visit to the consultant I was told that they had no idea what caused sjs. Upon reading the information on your web site it occurred to me that during my exams I was taking copious amounts of benolin. That was over 20years ago it is interesting that all this time later I may have the answer that over the counter medicine could have caused it. Thanks for the information. |
| Add Email to Story: | No |
| ID: | 100056
|
Time/Date: | 03:30:41 PM PDT/ 09-21-2009 |
| Name: | Joseph chonka |
| Email Address: | EmailAddress@notprovided.com |
| Story: | After having elective foot surgery, my podiatrist thought I may still have an infection 2 weeks later. He had his physician assistant prescribe me Bactrim, after telling him I had a previous bad reaction to Sulfa. After only one dose I knew I was getting the same reaction I had 2 times previously. Twice before no one had correctly identified this as SJS. It took 12 days before a Urologist correctly identified this as SJS. I suppose I was lucky it manifested itself where it did and not in my eyes. I really feel for those who had this worse than me. What I think is odd is that I can't find a lawyer to make a case out of this because there is a warning label on Bactrim that says it could cause SJS. It took 3 occurrences of this for a medical professional to even diagnose it. How on the world is the average lay person suppose to know what SJS even is when they read the warning label? |
| Add Email to Story: | No |
| ID: | 100055
|
Time/Date: | 07:37:34 AM PDT/ 09-18-2009 |
| Name: | LORI GAGNON |
| Email Address: | jsttennis@aol.com |
| Story: | I GOT A BUG BITE AND IT GOT INFECTED,I GOT PUT ON BACTRIM A SULFA DRUG.APPARENTLY I WAS ALLERGIC.I TOOK THE DRUG FOR 6 DAYS BEFORE I STARTED TO BREAK OUT.IT TOOK 4 DAYS BEFORE THE PROCESS WAS FINISHED.I ENDED UP IN THE HOSPITAL FOR A WEEK.I HAD SEVERE RASH COVERING MY ENTIRE BODY.I GOT SORES AND BLISTERS IN MY MOUTH ALMOST SENDING ME TO THE BURN UNIT,BUT I BEGGED NOT TO GO.SO I STAYED AT THE CURRENT HOSPITAL I WAS AT,BECAUSE I WORKED THERE FOR 17 YEARS.I HAVE NO HEALTH INSURANCE.I GOT BLISTERS ON MY FEET WHICH ARE STILL THERE A MONTH LATER.I HAVE NOT BEEN ABLE TO WORK.I AM 2 MONTHS BEHIND ON MY MORTGAGE.I HAVE A VERY GENEROUS ROOMATE AND FAMILY WHO HAVE BEEN THERE COMPLETELY FOR ME.AFTER 5 WEEKS I STILL HAVE HUGE BLISTERS ON MY FEET,I CAN HARDLY GET AROUND.I AM SELF EMPLOYED SO IF I DONT WORK I DONT GET PAID.I STILL HAVE THE RASH.MY SKIN IS PEELING,WHICH IS GROSS AND UNCOMFORTABLE.THE NEW SKIN UNDERNEATH IS TENDER.IT HAS BEEN A NIGHTMARE FOR SURE.IT HAD PUT ME IN A FINANCIAL BIND .IT HAS BEEN EMOTIONALLY VERY DIFFICULT.I GOT PUT ON STEROIDS WHICH ALSO WERE VERY HARD TO PUT UP WITH SIDE EFFECTS.I GOT STEROID INDUCED HIGH BLOOD PRESSURE,WHICH WAS VERY SCAREY.LAWYERS ARE SAYING THEY ARE NOT TAKING CASES FOR BACTRIM BECAUSE IT HAS A WARNING...IT REALLY IS TERRIBLE.SOCIAL SERVICES WONT HELP BECAUSE I OWN A HOUSE.I AM STILL IN THE MIDST OF THIS TERRIBLE SYNDROME WHICH I DIDNT EVEN KNOW EXISITED UNTIL IT HAPPENED TO ME.I HOPE THAT MORE PEOPLE BECOME AWARE OF THIS DEVASATING AND DEADLY SYNDROME.ALL THE DOCTORS TOLD ME I WAS LUCKY BECAUSE THIS CAN KILL YOU.GOOD LUCK TO ALL WHO HAVE BEEN DOWN THIS ROAD..AND GOD BLESS. |
| Add Email to Story: | Yes |
| ID: | 100054
|
Time/Date: | 08:16:16 PM PDT/ 09-17-2009 |
| Name: | Danie Lowe |
| Email Address: | DanieDanger77@yahoo.com |
| Story: | When I was 13 years old I got my first period but it didnt go quite as planned. When I had my first menstrual cycle the first few days were normal but on the third day I got this odd itchy, stingy, tingle in the back of my throat and I felt it progress into my mouth. Moments later my lips, eyes, palms, wrists, legs, vaginal area, and neck began to itch and burn. I had noticed that all the places that itched were inflamming and turning into huge risen welts. By that night all of the welted areas became water filled blisters. I let it go for a few days thinking that it would pass or something but it just continued to get worse so I went to the hospital. I sat in the e.r and when I finally got back to see the doctor he didnt know what it was after running every single type of std test there was on me so he told me to follow up with my pcp and get referred to a specialist in dermatology. By the time that I did get to see the specialist my blisters had faded and all of my symptoms were gone so I just let it go. Now with it being my first year of having my menstrual cycle I was very irregular. So about 3 months had gone by since my last break out of SJS and I got my period again and sure enough 3 days into my period I got the odd sensations in my throat and it started all over again. Once again I went to the e.r and they said the same thing "to get into a specialist" and once again my symptoms werent very visible by the time I got into the specialist. I went to the hospital for the next few times it happened but I eventually gave up on going to the e.r because they always told me the same thing. I kept having these random break outs accompanied with my irregular period on and off for about a year and a half and it always seemed to get worse with each break out. My freshman year of high school I had another break out in October and this one was the worst yet so my grandmother got me to the hospital and demanded them to admit me and we were not going to leave until they found out what was wrong (bless my grammy). During the stay we went into deep detail and we noticed that my blisters occured in all the places that I had ever broken skin like previous places I had been scratched, cut, skinned my knees, elbows, etc. and we also recalled on me having a bladder infection just shortly before my first period and that I was prescribed Bactrim. This lead them to diagnose me with SJS and Erythema Multiforme. SJS because of the allergic reaction to the Bactrim and Erythema Multiforme because of the lesions forming on places that the skin was previously broken. They still do not know why it linked itself to my menstrual cycle but I have been on the Depo Provera Birth Control shot which has stopped my period completely ever since and I definitly do not take any medications unless totally and completely necessary and of course its only tylenol now. I am 18 years old now and havent had any complications since my sophomore year of high school when I took advil thinking it was tylenol and had a not as severe break out. Thank you for taking your time to hear my story =D |
| Add Email to Story: | Yes |
| ID: | 100053
|
Time/Date: | 06:39:05 AM PDT/ 09-17-2009 |
| Name: | maria teresa berdugo puerta |
| Email Address: | EmailAddress@notprovided.com |
| Story: | Tengo 56 años, me dió el sindromé cuando en 1982, cuando tenía un hijo de 10 meses de edad,
Tenía un dolor en las articulaciones y me recetaron DOLOVID, empezaron a salir llagas en la boca que me impedian comer, y mi esposo rapidamente me llevo a la clinica. Realizando esta consulta en internet compruebo la suerte que tuve.
Estuve doce días en clinica, sin comer, la piel brotada, quemada, los ojos con secreción permanente , cada vez que podía los limpiaba, las personas que me visitaban no me conocian.
Apenas pude tomar algo volví a mi casa , con poco peso pero feliz.
La piel muy seca, los ojos con orzuelos , al poco tiempo fui al optometra y decidí usar lentes de contacto, me han ayudado mucho a evitar ardor , mas adelante me diagnosticaron chalosis en los ojos, como unas piedritas que molestan, el lente ayuda a que no roce con el ojo.
Se me cayeron todas las uñas, pero volvieron a nacer , no tan buenas como las originales, pero hay estan, solo la del dedo posterior al meñique de la mano izquierda se quiebra siempre, y su compañera del pie izquierdo apenas trata de nacer.
Cuando me dió el sindrome era profesora universitaria, trabajé 30 años, tuve otro hijo al año del sindrome.
Despues del sindrome he sido una person sana
. |
| Add Email to Story: | No |
| ID: | 100052
|
Time/Date: | 09:14:32 AM PDT/ 09-16-2009 |
| Name: | Linda Rioux-Fleming |
| Email Address: | EmailAddress@notprovided.com |
| Story: | In December of 2007, I was suffering from a lower back problem, and the pain radiated down my left leg.
I went to my primary care doctor, he took an exray and said it was arthritis. He prescribed Celebrex. I finished the Celebrex and I still had the pain. I went back to the Dr., after telling him I am sensitive to medications, he prescribed Daypro and anti inflammatory drug. Three days into taking it, I woke up during the night with both of my palms itching. I got up, turned on the light and my palms were red, so I ran them under cool water which soothed them and went back to sleep.
The next morning I got up and began getting ready for work. I noticed my lips were swollen, having some medical experience, I knew this could be an allergic reaction. It was 5:00 am, so I figured I would go to work since I work in a hospital, if sysmtoms persisted, I'd go to the ER. At 9:00 I called my primary care Dr., I told the person who answered the phone my symtoms they transferred me to the nurse call line where I got the message that a nurse would call me back within 8 hours. By 11:00 that morning, my lips were still swollen and I was getting a rash on my stomach. I decided to go to the ER. One Dr. looked at me and said it's an allergic reaction and discharged me. I did not feel comfortable leaving so I told a nurse and she sent in the Dr. that just arrived on his shift. He looked at me and said perhaps I should see a dermatologist. I told him I had a good dermatologist, so he discharged me and told me to see her.
The next day, the rash had spread over my body and was itchy. My lips were still swollen. My daughter took me to my dermatologist. While I was waiting to be seen, my other daughter, who is a nurse did some research and called me to tell me to ask the doctor is I have Steven Johnson Syndrome.
Dr. Smith came into the room and I did not have to ask, she immediatey took one look at me and said "You have Steven Johnson Syndrome" we need to get you to a hospial right away. She then explained to me what it was.
She did not have admitting privleges, so she wrote a note, told me to go to the ER and be admitted, give the note to the doctore and have them call her. Which I did.
She overlooked my care since none of the doctors or nurses knew what it was. She saved my life. She prescribed large containers of a sauve that looked like vasoline but had steroids. she told me to rub it all over my body including up inside twice a day. Meanwhile she presciribed large doses of steroids via IV. She stopped in every day and called making sure the Dr.'s and nurses were supplying me with what she asked for. I was lucky, only one of the welts turned into a blister, we kept it moist with gobs of sauve.
I was in the hospital four days, Dr. Smith then said we need to get you home, too many germs int the hospital. I continued to use the sauve for several weeks and took steroids by mouth while visiting Dr. Smith once a week.
Dr. Smith saved my life. No one knew what it was, meanwhile it was progressing rapidly by the day.
I am very careful what I take now. Only Tylenol when needed.
I still have the pain in the hip and leg. I have had two injections into the facet joint and now go to physical therapy.
|
| Add Email to Story: | No |
|
|
 |
 |
 |
 |
|