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| Read stories results: Found 180 matches out of 180 records.
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| ID: | 100020
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Time/Date: | 01:35:58 PM PDT/ 06-28-2009 |
| Name: | Michael Wilmoth |
| Email Address: | mikewilmoth@comcast.net |
| Story: | I was diagnosised with SJS in 1968 just before my first birthday. I really should get my Mom to share my story. I do know that it started with a rash on my stomach that in a matter of 24 hours coverd my entire body and manifested into a blister. When I first arrived at Baptist Hospital in Winston-Salem, NC they told my parents I would not live through the night. At it's worst, my face was so swollen that no facial features were distinguishable.
As my condition improved, they first told my parents I would be brain dead after having such a high fever for so long.
After some brain activity was detected, they said I would suffer from sever mental retardation.
They also told my parents I would be blind, and probably deaf and dumb.
I have only seen photos of me after returning home, with my hands and feet wrapped and Mom said everything had to be sterile.
Today at 41, I have no significant problems relating to my illness. I am an attorney, who owns a company working to help the unisured gain access to medical care. |
| Add Email to Story: | Yes |
| ID: | 100019
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Time/Date: | 01:35:04 PM PDT/ 06-28-2009 |
| Name: | Gina |
| Email Address: | ginaskrap1@yahoo.com |
| Story: | Hello, My daughter Brianna went to the hospital on 04/04/2009 and I was told she had a allergic reaction to something. We got released. That night she just got orse like she was on fire and mouth started to peel. I took her back and said we were in here earlier and they needed to do something about it. Goos Sam addmitted her and they could not figure it out. Got stransferred to another hospital they said Steven Johnsons Diease. They a doctor looked at her and sent us to another hospital to the Burn unit were thet diagnosed her with the TENS. It was a rough road. If anyone needs to talk or any questions that I can help. I think that this is horrible from Childrens Tylenol. |
| Add Email to Story: | Yes |
| ID: | 100018
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Time/Date: | 01:34:15 PM PDT/ 06-28-2009 |
| Name: | David P Cresap |
| Email Address: | dpaserc@suddenlink.net |
| Story: | I am a 56 year old male and have been an Alternative Medical Specialist as a Human Body Mechanic for 18 years.
On April 4th 2009 I injured my left foot and was given Keflex to control any infection as a result of the injury. After almost a week it was apparent that the medication wasn't working well since there was redness, slight swelling, and a few red dots near the injury.
On April 10th I returned to the ER to have it checked and possibly have the medication changed. At this time I had a white blood cell count of 8000 which indicated an increase in infection.
They chose to admit me to the hospital to enable better management of the infection. That night I was give Ampicillin Sulfactin in an IV. In the morning I awoke to find my skin was a peachy pink/red color and covered over 95% with large red blotches with purple highlights. It also included internally, my mouth and esophegous down to my stomach. The only areas unaffected were the backs of both hands, my face and my right foot.
Neither the attending doctor nor orthopedic consultant for my foot had ever seen such a reaction. On Saturday afternoon a specialist was called in and he took out the IV and I was given a small injection of benedril. I was unable to eat or drink and was projectile vomiting because of the stomach upset, extreme pain involved with swallowing and occasionally speaking initiated my gag reflex. (The swallowing pain continued until Tuesday evening.) The vomiting stopped Sunday.
Sunday morning after my visits with the doctors who appeared to be clueless as to what to do, I realized I needed to take control and do what I knew to do. By this time my nurses referred to me as "The Leopard Man".
I was in no pain except for swallowing, and realizing my condition was my body's swelling (inflamatory) response to the chemical (antibiotic medication) ampicillin sulfactin. I asked my wife to bring me "pure citrus bioflavinoid" (containing no Rutin or Hesperidin) and I started taking 5000mg 3 times a day or 15000mg per day Sunday, Monday and Tuesday. This was a real challenge because of the painful difficulty swallowing. Citrus Bioflavinoid is a NATURAL anti-inflamatory which is safe and water soluble which means one cannot overdose as the body will excrete in the urine any excess. I have been using this Citrus Bioflavinoid in my practice for many years with great success for swelling conditions resulting from athletic or accident trama.
Sunday night I was given a second small dose injection of benedril which did not seem to have any effect. I had white blood cell count of 19000 and a temperature of 103.4
Monday I continued with the megadosing of the Bioflavinoid, was feeling better and by that evening I was seeing my body response to the treatment.
Tuesday morning the blotching was fading, the swelling was going away, my white cell count was normal so the doctor was going to release me, but because I still could not swallow, she decided to keep me for one more day and have a gastro-interologist come see me. (He did not show.) I was able to eat something Tuesday night.
Wednesday (April 15th) I was released as I had no more swelling, the blotches were faded. I was weak from my ordeal however, I assume from no food or water by mouth for 4 days. (only 2 liters of IV fluids per day ie; 5% dextrose with potasium) I was able to eat and drink Wednesday with only a little discomfort.
Today (April 30th) I continue with the Bioflavinoids and since my release from the hospital, have added Golden Seal Root (A natural Anti-biotic). I have no swelling, no infection, am healing nicely and my energy is returning.
The one side effect now, is that I am sloughing my skin as though I had a massive sunburn and it itches.
Overall, it was an interesting experience. It is a little concerning that the allopathic medical community is unprepared to recognize and treat Steven-Johnson Syndrome expediciously. My experience was that the SJS lasted 4 days with no negative side effects. Further, it has been my experience that when there is a chemical challenge to the body that maybe commercial chemicals are not the best treatment modality, because they can add more conflict. In my case it appeared to be the use of natural elements that the body could easily recognize that provided the answers, and a positive outcome.
If I can help, I am willing to answer any questions regarding my experience.
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| Add Email to Story: | Yes |
| ID: | 100017
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Time/Date: | 01:33:15 PM PDT/ 06-28-2009 |
| Name: | Kristina Smith |
| Email Address: | fearmeimagoober@yahoo.com |
| Story: | I was diagnosed with breast cancer when I was 25 years old. My chemo ended up giving me SJS. I had red blotches from head to toe and my genitals were severly swollen and raw inside and out. My doctors never formally diagnosed me with SJS but we know that's what it was. I still get mild occorances from it, I'm dealing with one right now. I would like to know why it comes out mildly when it feels like it and if it will ever go away. I dont really have anyone to ask these questions to. Thanks. |
| Add Email to Story: | Yes |
| ID: | 100016
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Time/Date: | 01:31:32 PM PDT/ 06-28-2009 |
| Name: | julieta e quiban |
| Email Address: | EmailAddress@notprovided.com |
| Story: | Hi. I'm Juliet Quiban, 48 yrs old, from Philippines and hopefully a survivor of SJS because I was hospitalzed last April 19 2009 and went home April 24, 2009 and right now stll undergoing steroids medication which will end on May 18, 2009. I had a very close call and were if not for my very good doctor Jerry Castro and Dr Garcia I don't know where will I be today. I had lesions and blisters all over my face and my whole body front and back. My arms and forearms were also full of lesions and blisters and my neck and my chest and thank God very minimal in the legs and feet. I had plenty of lesions and blisters also in my hair and ears and nose and inside my mouth. Up to now I still have blisters andcracks in my mouth but I can say I'm recovering remarkably. I hope that I can still say this thing in the near future but I intend to conquer my Steven Johnson Syndrome and I"m pretty sure I can make it. I had sulfa drugs for UTI and then Allupurinol for uric ang Zymbastatin for my cholesterol. Mine is very adverse reaction to drugs. |
| Add Email to Story: | No |
| ID: | 100015
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Time/Date: | 01:30:34 PM PDT/ 06-28-2009 |
| Name: | Glyn Elrod |
| Email Address: | EmailAddress@notprovided.com |
| Story: | August 27, 1998:
Was in attic and fell through ceiling. First thing was that hit was my head on the kitchen table. Severe head injury, was put on CareFlight helicopter to Methodist Hospital in Dallas. After a few days, due to the swelling of the brain, they had to do surgery to remove the frontal and temporal lobes.
After 10 day coma, I began recovery. Soon though, I got to feeling worse; sore throat and was cold all the time. Eventually I started breaking out in a rash all over body, and all fingernails and toenails came off. Was in a great deal of pain; so much so I asked an associate pastor from my church to pray for my death.
Eventually they figured out I had SJS. It was caused because, unbeknownst to all, that I was allergic to Dilantin. |
| Add Email to Story: | No |
| ID: | 100014
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Time/Date: | 01:29:13 PM PDT/ 06-28-2009 |
| Name: | linda harcourt smith |
| Email Address: | lavendergrove@yahoo.co.uk |
| Story: | hi there
this is a very short story . I have a son who has had reoccurring SJS over the last 17 years he will be 18 this year.
He has been admitted into hospital 23times from either Ereythema Multiforme severe or SJS.
He is at college presently and would achieved this year 13GCSES he is a bright healthy young man who is a credit to me and to his peers.
I would just like people to read this and see there are not only survivors of SJS but can lead a normal life.
Thanku
Linda and Ian |
| Add Email to Story: | Yes |
| 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 |
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