He looks and acts like a typical teenager, but at 17, Desmond Pullen has had more close calls than most people can claim in a lifetimeagonizing headaches, collapsed lungs, several strokes and brain surgery.
I remember it was 1992, Des had a real stroke it wasn't a miniature stroke—his lungs collapsed at the same time, his blood pressure was high
Desmond was born with Sickle Cell Disease—an inherited condition often misrepresented as solely and African-American problem.While blacks may be at higher risk, the treat can be found in all races and medical authorities advise every newborn be tested for it.The disease occurs when red blood cells, normally shaped like doughnuts, mutate into a sickle-shaped hindering oxygen distribution in the body.
Bea Files, MD:
After the cell delivers oxygen to tissue, or if the cell is stressed by some chemical or some illness, then it changes to this sickle shape with very sharpedges and that can block a blood vessel so that tissue is deprived of oxygen and blood flow.
And that can lead Lung and kidney damage, stroke and frequent infections. It's not uncommon for excruciating pain to result.
It was so severe that he was on morphine drips—and to look at all these machines—my son had machines going from his arms, sides, private parts and yet Iwould look at him like, god just please let my child live.
Dr.Bea Files credits Desmond's regimen of blood transfusions for his recent improvement. The monthly sessions have kept him stroke-free for more than five years.In fact transfusions, new medicine, and the practice of giving antibiotics to babies with Sickle Cell, have improved the odds for many born with the disease.
Bea Files, MD:
One in three children with sickle cell would die in early childhood, before the age of three.Now that number is diminished to somewhere less than 10 percent all the way up to age 18—so dramatic improvement.
A side effect of the transfusions, however, is a build up of iron in the body to toxic levels. If not dealt with this can devistate tissues and organs.
The traditional method to treat this condition requires an often painful 8 to 12 hours injection directly into the skin.But Desmond is in a clinical trial for a new drug that would remove the iron with out the injection. So far its working well.This allows Desmond more freedom—time he can spend thinking about his future rather than his stay in the hospital:Desmond has enrolled in a college specializing in gourmet cooking. Such a goal might have seemed far fetched only a few years ago.
I just live my life like I'm going to live a long time.
My greatest hope and my greatest faith is that Des will be completely healed, completely whole from this disease.