 |
 |
 |
 |
| Read stories results: Found 180 matches out of 180 records.
|
|
|
| ID: | 100159
|
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
|
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
|
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
|
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
|
| Add Email to Story: | Yes |
| ID: | 100155
|
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
|
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
|
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
|
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 |
| ID: | 100150
|
Time/Date: | 10:33:13 AM PDT/ 08-18-2011 |
| Name: | Laura Clark |
| Email Address: | EmailAddress@notprovided.com |
| Story: | On July 26th I was told that my loving funny happy great Aunt Edie was diagnosed with Stevens- Johnsons after being given Bactrum DS for a UTI. I am a nurse and immediatly started researching. Your website was one of the first ones that I actually found with any profound information. On July 30th I was able to make the trip to Litttle River SC to see my aunt. I found her in a small hospital with friendly staff but no one knew how to treat her. Her POA (non family member) left for a cruise knowing the condition she was in (long story). Hospital staff were kind but clueless on how to help or treat her. Just during the weekend her mental state declined and she no longer knew family or friends. I pushed for her to be placed in a burn center to treat her horrible wounds and pain but hospital staff could not assist me in my questions due to I was not her POA. It had already been planned by the hospital to send her to a Hospice Home. I was angry no one would talk to me no one would assist me in getting her help. She could not even ask for her pain medication much less make a decision to where she wanted to go. Found out the POA had had her to sign a DNR and obviously in SC this means no help at all!! I had to return home for work with no one to cover for me but was able to take the following week off. I was never allowed to speak with the doctor. I left messages and the doctor never returned them.
August 7th I was able to return what I found horrified me I found that she had basic wound care. No IV fluids and her meals came as regular meals. A week before we had taken her dentures out and I had told the nursing staff at the hospital she did not need to attempt to chew with dentures because I had found a large piece of skin from her inner cheek in her mouth. I first had them change the diet she struggled to eat with assistance and nursing staff states since she was a DNR they did not have to have someone feed her. Horrible Horrible. I fed her. My great aunt was dying in front of my eyes and no matter how much a stomped my feet and yelled there was nothing I could do. I made the decison to try and get POA for her some way I had to do something! On the way to visit my aunt on Aug 9th the sad call came in, she had passed away. How could this happen? Why was a woman that could have been given a chance not given the right to try and live. My story serves one purpose, loved ones must be a patients advocate ask questions and when you question something make sure you double check and do research. Get second opinions and never ever give up. My mother says that under Gods plan when it is your time nothing can stop his will. I just wish my aunt had a fighting chance this way my heart would more easily heal. I thank you for your site I went armed with printouts and information to the hospital but if fell on deaf ears. Thanks so much though for your helpful site,
Laura Brewer Clark great niece of the late Juanita (Edie) Northcutt Crowe of Little River SC. |
| Add Email to Story: | No |
| ID: | 100149
|
Time/Date: | 05:25:38 PM PDT/ 08-17-2011 |
| Name: | tonya turner |
| Email Address: | tonya.turner74@yahoo.com |
| Story: | i found out i had sjs last august when i woke up and had 2nd and 3rd degree burns on my underarms in my mouth in my nose on my privites and on my feet. they rushed me to the burn center where i stayed for 8 days in icu. thought i was lucky then because they got it under controll. its back been battleing this for a year. im more scared now than i was when it first happen because im pretty much out of options. if i get sick in any way theres nothin i can take to help me. i was told not to take anything not anything and that is scary. i hope one day to be able to give at least 1 million dollars tryin to find out more about this problem and my will has already been made when i pass my body will go to sjs foundation in hopes of finding something out in my body to maybe safe someone else or maybe even many. thanks for listening. |
| Add Email to Story: | Yes |
|
|
 |
 |
 |
 |
|