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Writing through pain
Fredericksburg resident PJ Noel keeps the pain of sickle-cell anemia to himself, but doesn't hold anything back when he's got pen in hand
Date published: 5/30/2008
By CATHY DYSON Over the years, doctors have asked PJ Noel to act more like a wimp. They've told him he doesn't have to be so tough all the time, that it won't hurt if he lets his guard down. They've reminded him he doesn't have to say his pain is a "2" on a scale of 1 to 10, when they know it's much worse. But so far, Noel hasn't followed doctors' orders. The 20-year-old is stoic about the symptoms of sickle cell anemia because he doesn't see the point of making a fuss. "My reality is I'm going to be in pain every day of my life. It's going to be difficult," he said. "But I don't like to stay in the negative too much because that's not going to help me at all." Sickle cell is a genetic disease that affects red blood cells. The normal round cells distort into long, sickle shapes and create blockages in blood vessels. That can cause pain and swelling, as well as the bone and tissue loss. Noel's right side deteriorated so much, he needed a hip replacement at 17. He'll eventually need the same operation on his left side. But he doesn't focus on the fact his body is more like a senior citizen's than a young man's. He's grateful that he can walk, talk and see. His mind is perfectly capable of concocting characters that share his struggles or ones who take him far away. Noel writes poems, stories, music and short films. Some are real, some fiction. They all have a message, whether he's commenting on race relations or make-believe revenge on those who cut his cornrows. He has a good time putting thoughts on paper, and writing takes his mind off the pain. "I think that is his release," said Janice Davies, who has known Noel since he was an infant. "It gives him an opportunity to get out of self and into a new realm of imagination and creativity." Even as a child, Noel demonstrated a "quiet reserve," said Jene Radcliffe-Shipman, who organizes sickle cell programs for the Virginia Department of Health. "It is as if sickle cell has been his creative muse at times," she said. "His pain speaks, not through anger or aggression, but through his written word."
Date published: 5/30/2008
NICOSAN (Niprisan) FDA/EU Orphan Drug for the Treatment of Sickle Cell Anemia
(posted by
Asclepius
, May 30, 2008 8:04 am)
In clinical trials NICOSAN was shown to eliminate crises in
80% of patients and in the refractory 20% reduced crises by
half.
Toxicity studies have shown it to be safe and non-toxic.
For information about clinical trials, animal studies and in
vitro studies please visit;
sicklecellsurvivor.org/node/16
Questions, comments?
Kristina Bruce RN
NicosanForSickleCell@yahoo.com
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