SJS (Stevens Johnson Syndrome) is nasty shit. My son has had it four times. It wasn't diagnosed as SJS until the fourth time and it almost killed him. It's difficult to diagnose, and was relatively unknown when my son first had it. It was the first case they had ever seen at Legacy Emmanuel. To describe it as a painful skin condition doesn't come close to describing it accurately. The skin lesions are a symptom. It is actually an autoimmune disorder. You body is basically attacking itself. The lesions are like third degree burns - just as painful and just as prone to infection. They usually start in, and around, the mouth and spread down the esophagus, which is why it's difficult to eat and speak. The last time my son had it, he had lesions over 30% of his body, plus his entire digestive tract was raw and bloody. From earlier reports, it sounded like Manute had a good chance to pull through once he got back in the states. I had hoped he would and that his bout with SJS would help raise awareness among doctors and ER personnel. SJS is triggered by different things in different people (in my son's case, it was ibuprofen). The key to survival is to identify the trigger early and get the patient off it immediately and then start treating the symptoms (typically in a burn unit). It makes me very, very sad that such a great man had to suffer so much and pass away much too soon. RIP Manute. The world was a better place because of you. I hope others will carry-on the great humanitarian work you started. BNM
He was often ridiculed for his gawky height. His slow unnoticed death was from the wrong dosage in his Sudanese doctor's prescription for his kidney dialysis medicine. On the TV in his hospital room, when Jimmy Dean died last week, maybe his song "Big John" played about a tall hero's death. I found this fascinating article. The lion he killed with a spear was sleeping. It was routine training for a young man. I always pictured it as that the lion was attacking. He wasn't a son of a chief like Wikipedia says, he was a grandson. He didn't play until he was 15. All his life he had 3 clawed fingers on his right hand, a birth defect. He was a 5th round pick (#97, age 20) of the Clippers 2 years before he was a 2nd round pick (#31, age 22) of the Bullets. After drafting him sight unseen directly from Sudan to prevent Farleigh Dickinson U. from recruiting him, the Clippers found that the 180-pounder spoke and read no English. Cleveland State got in on it and had him take English at Case Western for a few months in Cleveland. He never played or practiced with Cleveland State, but his presence earned them an NCAA probation. Then he played 1 season for the U. of Bridgeport, then for the USBL in Rhode Island, and then was drafted the second time. His former wife was no American white blonde, and was no black American with straightened hair, narrow nose, and white woman's face only tanned. She was a 5 foot 7 Dinka tribeswoman straight out of his own dairy culture. http://www.answers.com/topic/manute-bol
i did have a check up on the condition after reading the news, sounds like one hell of an affliction How's your son now? I did read it can be triggered by reaction to medication as you mentioned, definitely something that needs much more awareness....
thought we should also remember his humanitarianism too he donated near all of his NBA earnings to help stop the war in his home country of Sudan. truly a great man and an force for positive change. [youtube]tRt0fYbzSwQ[/youtube]
My son is fine now. Thanks for asking. Fully recovered, other than some scarring on his lips. It took four times, each one worse than the previous, before he was diagnosed with SJS. He's very lucky to be alive and lucky he didn't lose his sight. At first, we thought is was a reaction to the flu vaccine (three of the four outbreaks happened about two weeks after getting a flu shot). Thankfully, I remembered he had flu like symptoms, including fever, and had been on ibuprofen all four times, or we might never know what caused it. Ibuprofen was the one common link between all four episodes. As long as he doesn't take ibuprofen, he's fine. The outbreak that almost killed him was three and a half years ago. He was 11 at the time. You can't imagine how difficult it is to see your kid go through something so horrific. I wish he would have been diagnosed sooner, but the doctors that treated him had never even heard of Steven Johnson Syndrome. Because it started with mouth sores, he was tested for all strains of herpes multiple times, thrush, hand, foot and mouth disease, etc. It wasn't until the fourth time that a dermatologist at Legacy Emmanuel recognized the symptoms and ran a biopsy on one of the lesions that he was finally correctly diagnosed. I don't mean to be gross, but if you do a google image search (not for the faint of heart) on Stevens Johnson Syndrome, you'll see just how nasty this disease is. It really is sad that SJS played a part in the death of a great humanitarian like Manute Bol. There's a lot more information about SJS online now than there was when my son had his outbreaks. Hopefully, doctors are more aware of it now. Early diagnosis is really the key to a successful outcome. BNM
"He always talked about how he had killed a lion with a spear in the Sudan, but I was always pretty sure he had done it with one of his free throws.” ~Jeff Ruland - former teammate
Nice Woj piece... http://sports.yahoo.com/nba/news;_ylt=AmyUy7ZamIZQUbwCjb1Y9Ut0fNdF?slug=aw-boltribute061910
Woj made one phone call to Jeff Ruland and based his whole article on that one source. Well, there's a first time for everything.
I nearly died from Stevens-Johnson Syndrome when I was a youngster back in 1969. At the time, the doctors were completely baffled and dubbed my unknown disease "Sturgeon Mouth" assuming I had picked up a nasty infection from swimming in Oswego Lake. For 2 weeks I was fed through IV's while they bombarded me with anti-biotics and morphine, and prepared my family for the probability that I might not survive. Luckily for this board's content, my good Karma saved the day and I pulled through. I would not wish the considerable pain involved on anyone, certainly not a nice guy like Manute or Boob's son. Wow, 4 times. That's horrific. About 20 years ago my mother got a call from my former pediatrician telling her they had finally confirmed a diagnosis of my illness as Stevens-Johnson Syndrome. When I recently told my current physician about it because many medications can trigger it including one he prescribed to me, he had to look it up. Same with my previous physician. It's still relatively unknown and hard to treat. While I've been lucky enough not have a relapse, it is common for it to reoccur in old age. Other auto-immune diseases often follow, such as the psoriasis I've had since early adulthood.
