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| Read stories results: Found 180 matches out of 180 records.
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| ID: | 100161
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Time/Date: | 02:52:39 PM PST/ 02-01-2012 |
| Name: | Axel Diemers |
| Email Address: | axeldiemers@hotmail.com |
| Story: | I'm from holland, so my english is not very good.
June 2011.
I was ill, but strong enough to do some homework. It only got worse then. My mouth hurts very much so we maded an appointment with the doctor. She gave some medicine and the next day my mouth totally broken. My eyes where red and my skin came of. Once again we made an appointment with the docter. This time she didn't knew what it was en send me to the hospital.
In the hospital they gave me two pills, not knowing it wil make it worse. Hours past by and its getting worse. I was almost completely blind and my skin came of. The doctor knew it was SJS. I was send to Rotterdam but i was to bad to go. I did go anyway because i have to be alone because of infection. The next day was the baddest one. SJS stroke on the inside and i was almost dead. The eye docter said i would probally become blind. A miracle happend, i recovered en i'm not blind. Stil my eyes a damaged and stil the don't know the cause of it. I lost 10 kg in a weak.
I hope if some SJS survivors contact me because no one knows here what i've been through.
Kind regarts, Axel |
| Add Email to Story: | Yes |
| ID: | 100160
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Time/Date: | 02:01:35 AM PST/ 12-06-2011 |
| Name: | Amanda |
| Email Address: | yazzyface@gmail.com |
| Story: | My name is Amanda, I'm 20 years old and I was diagnosed with SJS when I was 15. The drug that caused it is Lamictal. My symptoms started on Christmas Eve, and I went to the hospital at 5am Christmas morning because I was having trouble breathing, my lips and throat hurt very badly. I was sent home without a diagnosis, and returned that night because I was getting worse. Someone finally caught on that I was actually sick, and I was transferred from SWWMC to Legacy Emanuel, in Portland. I was in pediatric ICU for 1 week, I don't remember what happened for that week, but I woke up in the burn unit and all of my skin was covered in bandages. A week later, my eyes got messed up. It was the worst pain in my life, since the doctors were weaning me off the morphine at the time. I was then taken to a normal pediatric room, where my most of my skin healed, but I still had problems with my lips not healing, they would be shut with blood, and whenever I opened my mouth my lips would bleed all over the place. After a total of 3 weeks at the hospital I went home, I still couldn't see, my lips were still messed up, and my hair was falling out. I was told my eyes would likely be back to normal in two weeks.
After I was sick, I lost all my nails twice, and still have problems with them today. I lost a lot of hair, but the hair loss is significantly less now. There is still scarring on my lips and tongue, and my vision got mostly better, but now I have very dry eyes, and eyelashes that constantly scratch against my corneas. I am very sensitive to light. I went through a lot of eye doctors before finding one I like a lot. He gives me lots of free eyedrop samples :] Thanks for reading, sorry my story is so long, I didn't mean it to be. |
| Add Email to Story: | Yes |
| ID: | 100159
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Time/Date: | 01:55:49 PM PST/ 11-22-2011 |
| Name: | James R. L. |
| Email Address: | EmailAddress@notprovided.com |
| Story: | I'm sixteen and have had two SJS reactions. the first was when I was eight years old, the second was when I was twelve. The first time I had it it went misdiagnosed multiple times, they finaly came to the conclusion that it was an allergic reaction to penicillin and told me i was allergic to all drugs in the cillin family. The reaction itself was rather mild, little skin loss and I wasnt hospitalized. It took three weeks to get better. The second time I was suffering from bronchitis (sorry dont know how to spell it). they were giving me drugs left and right. i woke up one day and my face had doubled in size and was blistering up. We went to the hospital and they misdiagnosed me, this time it was diagnosed as Herpes. They sent me home and i stayed there for about a week. As it progressively got worse my parents took me to the hospital again. Unlike the last time we went to a different hospital, and thats where they finaly diagnosed it a Stevens Johnsons Syndrome. i spent a whole week in the hospital, i couldnt eat, icould barely sleep, and i lost twenty pounds in four days. after a few days i began to get worse. I had multiple organs begin to fail and i came dangerously close to having major surgery. i became incredibly close to dehydration. however on thanksgiving i woke up and began to eat for the first time in two months. after everything was over and i returned to school i was isolated from everyone because noone wanted to come near me. i still suffer from occasional pain and depression. I've had to get glasses and I've lost some of my hearing in my right ear. this disease still affects me today and i hope noone ever has to go through it again. |
| Add Email to Story: | No |
| ID: | 100158
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Time/Date: | 10:42:58 PM PST/ 11-10-2011 |
| Name: | Emma Akridge |
| Email Address: | emma_akridge@yahoo.com |
| Story: | It all started when my son was fifteen. Dustin had a sore throat and running a fever so I took him to the emergency room. He was diagnosed with strep throat. Dustin was given an injection of penicillin and within two hours he had developed blisters on his face, arms, and body, his bottom lip was severely swollen, it looked as though he had two bottom lips. He began running a high temp. I took him back to the emergency room and was diagnosed with hand,foot and mouth disease. I was told to take him home and let it run its course. He was not getting any better and I took him to where his father worked to let him look at him. His father told me to
take him to another emergency room. Dr. Derick was the ER doctor and took one look at him and admitted him to the hospital. The doctors he was admitted under did not know what he had and what ever it was they had never seen it before. After two days of fluids, they called Dr. Shah a peditriction to come and take a look at him. He researched and researched and found that Dustin had SJS. Dustin recieved 19 bags of fluids and ten different bags of aintibiotics including diflucan. On top of the SJS he developed staph and a yeast infection. on the seventh day his lips turned black and started bleeding, he had lost around 30 pounds in a weeks time. His blisters started looking better. Dr. Shah stated that if he did not eat on the next day, he would send him to Augusta to the Medical College. Finally on the eight day he began eating. Our Pastor came over and prayed over him and in 24 hours we seen a change in him. A lot of people do not believe in miracles but I have seen if first hand. Then six months later after leaving the hospital he was bitten by misquitos at the river and develeped erythema multiforme and had to be hospitalized again. He was again treated by Dr. Shah and stayed only three days in the hospital. The next time he developed SJS by having a cold and was given Doxycline. When his lips started to swell and a blister developed we took to Dr. Shah and he was treated. After his eighteenth birthday we have not had any relapses. Thank God his eyes were not affected and it did not turn into TENS. I have been making everyone I come in contact with adware of SJS. I believe if more doctors were taught in medical school about this syndrome it could help eleminate a lot of suffering. |
| Add Email to Story: | Yes |
| ID: | 100157
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Time/Date: | 08:15:51 PM PDT/ 11-03-2011 |
| Name: | A. Lanpher |
| Email Address: | EmailAddress@notprovided.com |
| Story: | I am desperately hoping that you can recommend a resource to help me. I had my first SJS attack in '99 and lost 70% of my skin, most of my hair, my mouth linings, digestive and lung problems, and made it out the other side with asthma, IBS, vision problems, joint problems, idiopathic anaphalaxis, chronic hives, crappy immune system, photosensitivity, muscle weakness, bleeding stomach with erythema, multiple ovarian cysts, heart murmer, migraines, anxiety, and the list goes on. It has gotten to the point that I'm constantly on steroids and massive antihistimines w/only some help from them. I kept working through two more attacks, up until three years ago when my muscles became weak and my arthritis, allergies got so bad that I just could not continue my career. I have an autoimmune disease causing these reactions instead of a medication or outside source.
I filed for SS two years ago, but have been turned down three times and now that I am waiting on a hearing, my health care provider (a PA) who was so supportive has left practice and I can't get another one willing to help me. SS is still waiting on the paperwork from my doctor because they don't accept a PA's signatur and that is all I have ever been able to see for the last 3 years. I do have an allergy specialist who recently diagnosed me with chronic angioedema w/other complications and I have been to Mayo, however, SS wants my paperwork from a primary care provider.
I don't understand why my three inch file of test results, visit reports, etc is not sufficient and am just not able to find a primary care doctor who has knowledge of my issues. I live in the east valley of the Phoenix, AZ metro and would really appreciate any guidance you could give. I'm flaring now and down to my last pack of steroids and in a lot of pain. the stress of the SS and dr situation is making me worse and I have no idea where else to turn. I would really appreciate your help as this is wearing me out quickly after so many years. When I had my first attack and they weren't sure if I was going to make it, my dr then directed me to your site and it was so very valuable...I just didn't realize the extent of the damage that would be done and never thought I would have repeated bouts with this. Please contact me at qubesmommy@live.com. I'm so miserable, even Mayo couldn't give me a better diagnosis for why this is happening
Thank you for your kindness |
| Add Email to Story: | No |
| ID: | 100156
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Time/Date: | 08:36:39 PM PDT/ 10-26-2011 |
| Name: | Stefanie Ranghelli |
| Email Address: | Maiden4her@gmail.com |
| Story: | Hey everyone. My name is Stefanie Ranghelli and my mother...my best friend, has recently been diagnosed with SJS. In February of this year she was diagnosed with Small Cell Carcinoma of the right lung. She got through chemotherapy like a champ and was in a short "5 week remission"... That word shouldn't even be used in such a short stretch of time. However, her body was clear of active cancer. 3 of those 5 weeks, my mother experienced headsplitting headaches which she kept to herself in fear of scaring my brother and I. Her speach began to slur and her balance was completely off...she was rushed to the hospital, once again. After numerous scans and tests, A 3.7 inch lesion was spotted on the left side of her brain, as well several other smaller lesions throughout the rest of her brain. Back to treatment she went immediately. 15 straight, very high dosage Radiation treatments were done. Another pet scan 4 days after her last radiation session was done, and sure enough... Her body was yet AGAIN cleared of any active caner cells. With the next two days, she developed 3 small zit looking bumps on her cheeck. Then she started developing what looked like a super sunburn...keep in mind...she is still taking her regimin of medicines, one of which keeps her from having the mini seizures due to the pressure on her brain from the lesions. This medication is called Dilantin. Withing 3 days, my motherr is back in the hospital with her eyes swelling shut, pus like substance coming out of them as well. Her body is bubbling up violently with blisters that are oozing all of her body fluids. Her lips blow up like that of floatation devices. Her breathing is laboured, her oxygen saturation went all the way down to the 60's. The nurses feel they need to send her to a burn unit... The doctors are concerned that by sending smewhere else, they would have to start from scratch.
This is the most horrifying thing any one person can endure. Through this all, mom is able squeeze mine and my brothers hand when we ask if she can hear us, she even tries to sit up in her hospital bed as if she has so much to say...as he skin just peels away from her body onto the floor.. All she wants to tell us she love us back, but it hurts her too much. She actually was able to say something that we all were able to understand, and that was "Don't count me out, i'm not done yet".....
And that's where we are....
Please, if anyone has any advice or thoughts...or evenmoreso EXPERIENCE.. please reach out to me...i'll take all is i can get
God Bless
Stefanie Ranghellia
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| Add Email to Story: | Yes |
| ID: | 100155
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Time/Date: | 08:39:14 PM PDT/ 10-18-2011 |
| Name: | YESENIA GAONA |
| Email Address: | EmailAddress@notprovided.com |
| Story: | 28 YEARS AGO TODAY (10/18/2011) I SUFFERED FROM SJS. I WAS 12 YEARS OF AGE. I GOT TREATED AT JOHN SEALLY HOSPITAL LOCATED IN GALVESTON, TX..... THERE WAS NO MEDICATION TO TREAT THESE DISEASE, BUY AS A PASTOR'S DAUGHTER, MANY CHURCHES WERE PRAYING FOR ME AND GOD ALL MIGHTY, GAVE ME LIFE. WITH SOME EYE PROBLEMS, BUT ALIVE...... TO ALL THE FAMILY MEMBERS OF PERSONS FACING SJS, I JUST HAVE TO SAY THAT MY PRAYERS ARE WITH YOU ALL, AND EXPECT A MIRACLE FROM GOD WHO IS OUR HEALER..... |
| Add Email to Story: | No |
| ID: | 100153
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Time/Date: | 09:42:27 AM PDT/ 09-17-2011 |
| Name: | Jerry Stabnick |
| Email Address: | sstabnick@wowway.com |
| Story: | I'm 75 years old now and have had sjs since I was about 3 years old. I have been offered the opportunity to have an artificial cornea lense implanted in one eye, and then the other.
If anyone know anyone who had this done and had SJS, please let me know how it worked out for you. Thank you. Jerry Stabnick. |
| Add Email to Story: | Yes |
| ID: | 100152
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Time/Date: | 11:44:02 PM PDT/ 08-26-2011 |
| Name: | Jessica |
| Email Address: | Jessicapech92@yahoo.com |
| Story: | I've been living with SJS for 5 years now, about to me 6 years. When I was 14 , I had an allergic reaction to a medication called Lamictal. I was in and out of the hospital for basically my whole life. My outcome.of this illness is scars and marks left from the skin peeling and watery eye. I get red spot out of no where. My eye water every minute. this illness has effected me so much in my life , I am not able to work or attend.certain activity.
Please, I need help in understand what I went through. I would be glad if you email me.back . Thankyou.
Jessica P. |
| Add Email to Story: | Yes |
| ID: | 100151
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Time/Date: | 06:09:50 PM PDT/ 08-18-2011 |
| Name: | Jennifer |
| Email Address: | Outdoormama1@gmail.com |
| Story: | July 9, 2011 I started feeling flu-like symptoms. I was achy, had a sore throat, and felt like I had a fever though I did not take my temperature. I was in PA visiting my family. I was taking sulfasalazine for one week prior to this. The dr. had told me to increase my dose after one week to 2 pills twice a day. I was put on sulfasalazine for ulcerative colitis (which the dr. wasn't 100% sure I had). I actually had a colonoscopy scheduled to take place the next week. Anyway, I continued to take the medicine even though I continued to have symptoms. On July 12, I felt slightly better and my husband and I took the kids to a water park. At the water park I rubbed water off my arms and skin came along with it....not a lot but it was strange, like I was peeling from a sunburn. As we left the water park because I wasn't feeling good, my husband told me my lips were blue. Still, I thought I just had the flu. I continued to take the medicine. The next day was my 36th birthday and I was actually feeling better except I felt like I had a yeast infection. I just thought that was what I had because I was in a bathing suit the day before. It all started going downhill the next day, July 16. I woke up with a rash on my stomach. I still took my medicine that morning. Thankfully, my husband decided to research sulfasalazine and told me he thought I was having a reaction and to stop taking it. Later that afternoon, my eyes burned and itched with conjunctivitis. And the rash increased up to my chest. The next day my face was swollen. We were suppose to go back home, but I knew I needed to go to the doctor. It was a Sunday, so I went to a Med express. The doctor there told me it was strep throat and put me on antibiotics even when I told her I thought it was a sulfa reaction. I knew I needed my family doctor so the next day we drove back home even though I could barely see and my mouth was starting to blister. I went home, saw my family dr. who put me on prednisone and eventually sent me to the hospital. I was in the hospital for 11 days and I am very lucky. Hopefully, I will not have long term issues. I have nightmares, am still exhausted, my arms still hurt from iv's, and I am spotted, but I think I'm ok. I am still scared it will come back. My eyes are ok, but burn occasionally. I want to be positive, but I think it is still too soon for me to have a good attitude. I'm mad that this could happen to anyone. I couldn't imagine how hard this must be for a child to endure....and how helpless parents must feel. |
| Add Email to Story: | Yes |
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