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| Read stories results: Found 180 matches out of 180 records.
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| ID: | 100013
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Time/Date: | 12:55:55 PM PDT/ 06-26-2009 |
| Name: | TIKEENIA CAMPBELL-WHITE |
| Email Address: | KEENY333@YAHOO.COM |
| Story: | Hi my name is Tikeenia Campbell-White. I was initially diagnosed with SJS in 1992. Since then I have been struck by this illness in 2005, and again in 2007. My reactions came from E-mycin, Augmention, and Sulfur drugs. Although I am doing much better and most of my scars are gone, I still suffer from terrible symptoms of SJS and side effects from my medication. I get overheated very easily because some of my pores are scared shut, I often have dry eyes and mouth, and what bothers me the most is severe joint pain and reoccurring blisters. I have learned however, I am a survivor! I am very excited to find out that there are so many others who are just like me. Together we can bring more awareness to this illness. Others need to know SJS/TEN can happen to anyone at anytime. Although there are ways to cope and live with SJS there is not a cure yet.With God's gift of healing and a mission to live, we can live our best life now. |
| Add Email to Story: | Yes |
| ID: | 100012
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Time/Date: | 12:54:53 PM PDT/ 06-26-2009 |
| Name: | Rossouw Scharneck |
| Email Address: | marinda@tcbpublishing.co.za |
| Story: | My son is 4 years old, and was diagnosed with SJS in February 2009. He was on Augmentin ES 600 for a lung infection. 2 and a half weeks after taking Augmentin, he started with SJS symptoms. We took him to a pediatrician that knew about SJS, but unfortunately the Dr did not think that it was a serious condition. After weeks of phoning and looking for a Dr in South Africa that are familiar with SJS, we took him to another Pediatrician that thought SJS is a very serious syndrome. He told us how to treat my son and what to look out for. He also told us that he is not allowed to take any medication again, just Paracetamol syrup if he gets sick. He had 3rd degree burn wounds on his head, and on his legs. The wounds on his legs heald quickly, but the wounds on his head took about 3 months to go away. We took him for an ECG and to an opthamologist, ENT and to the Ear institute. We have been watching him like a hawk these last few months, so scared that something is going to happen again. He has had no after effects of SJS as yet. We know how lucky we are, it could have been so much worse. |
| Add Email to Story: | Yes |
| ID: | 100011
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Time/Date: | 12:53:41 PM PDT/ 06-26-2009 |
| Name: | orlando l. castro |
| Email Address: | orlandocastro29@tmo.blackberry.net |
| Story: | well...from what the doctors tell me,i had sjs all my life.its posible i caught it when i was born.it was dorment for most of my life.i used to get really sick as a child but my mom just thought it was the flu.so she would make soup and let me get alot of bedrest.when i was 20 years old i got sick and started noticing my skin literally falling off.i went to the emergency room and none of the doctors knew what was wrong with me.in the morning the dermotologist saw me and told me it was sjs.i get it twice a year since.august,and january.my guess is the climate change.i canot take anything over the counter as far as drugs.im 29 years old and im noticing some changes in myself,as well as my sickness.hopefully someone will find a cure.to contact me for questions or for help treating your child1347-596-9402.im not a doctor,but i've grown to accept my reality.if i can help,i will,for the sake of these children.im a strong believer of there being a positive to every negative.thank you...... |
| Add Email to Story: | Yes |
| ID: | 100010
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Time/Date: | 12:52:43 PM PDT/ 06-26-2009 |
| Name: | Melissa Hamilton |
| Email Address: | melissadhamilton@gmail.com |
| Story: | My name is Melissa and I had a father who recently passed away from SJS. My father was in his country in Central America Belize. He decided on going back there to his home after spending close to thirty years here in the U.S. My father wasn't the type to visit hospitals, in,fact, I never seen my father ever visit a hospital if he was sick he would just stay home and rest in bed without taking any medications. My father decided to visit the hospital in Belize anyway. After visiting the hospital I think my father had some kind of an infection so he was given antibiotics. My mother stated that after he had picked up the prescription something caught their eye, first they said that the medication was in spanish, basically, a language that they did not speak so clearly they would not have been able to read the instructions or more importantly the expiration date. She stated that the dosage and instruction on the prescription was the only thing that they could understand that was in English. My father took it anyway in hopes that it would had given him some relief. My mother stated that upon taking the medication my father noticed that the medication smelled funny, but he took about two anyway and left the remaining pills in the bottle. My mother said about the very next day, she noticed that my father had started getting lesions on the top of his head then later on the lesions spread to his entire body. Basically, my father suffered with this disease for almost a year, back and forth in the hospital in Belize. Finally six weeks before his passing the doctors finally figured out what was wrong with him. they told my mother that he had SJS and that there was nothing more that they could have done for him and sent him home to die six weeks after coming home my father died. My father's condition went undiagnosed for almost a whole year. It seems to me that if my father got proper medical treatment early on, he would have been alive today! |
| Add Email to Story: | Yes |
| ID: | 100009
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Time/Date: | 12:51:20 PM PDT/ 06-26-2009 |
| Name: | Anonymous |
| Email Address: | EmailAddress@notprovided.com |
| Story: | My mother was diagnosed with SJS 2days ago. Im really concerned about her health and i don't know if she'll make it. As black South Africans, it is a rare disease and it has covered her entire body. Luckily we have health insurance and she was admitted into a private hospital where they later diagnosed her with diabetes.... What are her chances? |
| Add Email to Story: | No |
| ID: | 100008
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Time/Date: | 12:49:55 PM PDT/ 06-26-2009 |
| Name: | Andrew Burt |
| Email Address: | andrewburt@me.com |
| Story: | Firstly thank you all so much for all your prayers and support.... On Friday the 8Th May my wife was admitted to the Royal North Shore Hospital Sydney Australia ...Leading up to this she had been taking Lamotrogene , an anti convulsent , and bactrim a sulphide anti biotic for an infection both known trigger drugs for SJS.... I had called her hospital from prior admission and reported swelling red eyes etc and they said ambulance now and so i did ...Over the next two days Chicken Pox was the diagnoses until Jeannine on the Sunday night could no longer swallow a pill then the Dermatologist was called in and SJS was diagnosed and IVAG was administered just inside the 48 hour window i am now informed... The next day she was moved to the burns unit and was seen by the acute pain team and theater was scheduled to debride Jeannine skin ...I wanted to stay by her side that night but was told by the unit manager that only upon iminent death does the burns unit allow people to stay the night..I took solace in these words and went home.... At this stage Jeannine was loosing skin off her whole body so i don't understand the criterea for SJS / TENs as they were still calling it SJS... After theater everything changed and Jeannine was moved to ICU in an induced coma and we were informed that her chances of survival were only 30%...Two days later as Dee lay comatose we were told that the baisal layer where skin regeneration occurs had been effected and her chances were now rated at about 10% and our family was essentialy greaving what we thought was an imminent death however no one told Jeannine this... Day after day she fought on and after about 10 Days in ICU skin was regenerating and Jeannine began to fight back until she is now one month after admission preparing to be discharged... Jeannine's case is a real success story for the very proud team at the RNSH ICU unit in Sydney and we are glad that what they have learned from this will be shared with other professsionals in the hopes that iy may help in the treatment of this dispicable ... I am however aware that if we had not been so fortunate we would be looking very closely at what drugs were being admintered prior to SJS diagnoses and we would be following up on the admission that the hospital may have failed to follow f proticol and diagnois was delayed but fortunatley i wont be doing that..... As for ongoing care Jeannine's eyes are not doing too badly concidering what they have been through and scaring should be minimal with maybe only some pigmenatation ..Tear ducts and sweat glands also seem to be functioning ok... We now enter the next phase of lives with an awarness of how blessed we have been given the intensity and level of involvment that Jeannine had suffered we have been so fortunate to be where we are now and would like to acknowledge our thanks to all those emails and comments of support from many of you hear... Regards...Andrew and Jeannine Burt |
| Add Email to Story: | Yes |
| ID: | 100007
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Time/Date: | 12:48:16 PM PDT/ 06-26-2009 |
| Name: | Carol Lockmer |
| Email Address: | caevlozo@hotmail.com |
| Story: | My story is happening right now on May 29, 2009 my daughter woke up with a fever and was coughing we took her to the doctor and he gave her medication for the flu and the fever and we started to follow his instructions, by saturday she had two blisters on the right side of her face she stoped eating and had dificulty drinking so we gave her drinks thru a straw an dthe next day sunday she could not even drink thru a straw we took her to the childrens hospital where they saw her and by then the blisters had grown to the size of a silver dollar, I said her friend had the chicken pox and probably gave it to her and the doctor said that this is some type of herpes and to stop all medication and to let the virus run its course they gave her a bath and put her in a bed, I saw her get worse and the fever could not be controled so against them I gave her medicine for her fever and as night time came she started to get like the chicken pox all over her body and her face blisters kept getting worse her face was turning black all over, at midnight they said some one (A CHILD)flew in and was getting checked in the hospital with might be the swine flu as soon as I found that out I left the hospital they would not let me leave as they said I will kill my child if I took her out but I could not risk her also aquiring the swine flu with all thoose open sores so at 1 am on monday June fisrt I was out on the street and my husband came and picked me up we took her home and we waited till morning and we took her to the best hospital there is in La Paz Bolivia and she has been diagnosed with SJS, she was getting even worse day by day until June the 3rd when her eyes were shut and mouth and she was with an IV and her whole face full of those blisters with a lot of like water inside but finally on that day her fever stopped and they changed her eye medication because the virus was getting to her cornea. she started to improve a little but we dont have medical insurance so today they had said to us she has no fever and is getting better she should go home tomorrow all her medication is thru her IV but they said when she goes home she has to take medicines oraly, please pray for Julie as Doctors even here dont really know much about SJS. We are originally from Orange California and Julie did get her chicken pox vaccine but right now we are in La Paz Bolivia. please some one help Julie with prayers as we do not have health insurance and they do not want to keep us at the hospital anymore. I have a video of Julie that I will forwar d to you which I shot yesterday. I gotta go now right back to the hospital. Please pray for her to get better and for my husband and I for the courage we need to go thru this. |
| Add Email to Story: | Yes |
| ID: | 100006
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Time/Date: | 12:46:53 PM PDT/ 06-26-2009 |
| Name: | Kathy |
| Email Address: | kemclallen@aol.com |
| Story: | Jan 2nd I started taking Augmentin for a sinus infection. On the 9th I had some vaginal itching (one of the label warnings on the side effect list). I didn't make the connection, and after another day, and another 2 doses (1650 mg per day) I woke up with my eyes crusted over, my lips and neck were extremely swollen and I had a pink rash on the back of my arms, my backside, legs, hands and feet. By the time I got to the Dr. an hour later it became a red angry rash which really hurt. The Dr said it was from the Meds and gave me a prescription for Hydroxyzine and sent me home. It got worse and blistered on hands and feet and peeled. I did not go to the Hospital, because my Dr said that unless I had open sores I didn't need to. A week later I was horribly congested and went to a new Dr. who said most likely I had SJS. He had me take Zyrtec D and another cough med. That night he called to see how I was doing. After a few weeks the peeling dramatically slowed down. I have not experienced any main permanent problems that I am aware of other than my hands and feet persist in feeling raw and sensitive to heat/cold and my eyes are very dry. Currently I have a rash for the past 2 months (it's now 6/09) which I am hoping is not related to SJS but now I am not too sure. It is on my elbows and shins mostly and is horribly itchy. |
| Add Email to Story: | Yes |
| ID: | 100005
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Time/Date: | 07:33:36 PM PDT/ 06-25-2009 |
| Name: | Tammie |
| Email Address: | tammiewynette@yahoo.com |
| Story: | I am a 38 yr old mother and wife who is a thankful SJS survivor. I contracted a stomach virus from a pt the week of Halloween 2008. I woke up on the Sunday morning with fecal matter everywhere and in a delerious state, I spent the rest of the day vomiting and loose stools. On Monday the 27th Oct, I was so delirious, my husband had to dress me and take me to the doctor. He immediatley put me on phenegren for nausea, and a diarhea med, I was off work until Nov. 2. Then the "nightmare" began. On Monday, Nov 3rd, at the next doctor appt., he informed me I had a UTI , and since I'm allergic to Penicillin, he prescribed septra. By the way, the UTI(urinary trach infection) came from the stomach virus. I took my antibiotic (septra) all week. I felt tired and weak, but figured it was from recovering from the virus. Then, on Wed, Nov12, I started having heavy heat flashes and sweating. I went on to the hospital to work, had an early staff meeting. As the flashes got work, my boss noticed I was breaking out in a rash and heavy sweating and confusion, she immediately began taking my temp. I went from 99.8 to 101.9 within 15 minutes. The next thing I know, I have a 102.8 temp with chicken pox like rash everywhere. She sent me home, at about 4pm. By the morning, I was at the dr's office at 7:30 am, covered head to toe with rash, temp of 106.7, couldn't swallow, hard to breathe, delirious. He took my blood pressure and it was 280/190, I had SJS.
My husband nearly collapsed. I am an avid mover, I go from day to dark doing housework, taking care of our boys, working at hospital, being sick is just not me. We immediately went into "I've got to survive this" mode. I was off work for 3 weeks (my work, by the way, put it as "fmla," since it was life or death), lost the skin off my lips, was on prednisone for six weeks, lost sight and hearing for several weeks on the right side, and had a small stroke. The stroke was suspected for a while, but recently confirmed. My life will never completely be the same, but thank God, I regained 85%of my sight and hearing that I lost and that I am here to be with my family. My doctor and the doctor I work for are overwhelmingly supportive and help me to keep a check on my health, I am so lucky to have them in my life. Being an SJS survivor is something I will have to come to terms with, but I have faith that I will surely regain some resemblance of my former self.
Thanks,
Tammie Howell |
| Add Email to Story: | Yes |
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