Sickle Cell is No Barometer for Fullness of Life

Sandra Jordan | 9/24/2010, 12:42 p.m.

Six years ago, St. Louis native Jacquelyn Whitney retired from KMOV TV Channel 4 after nearly 30 years of working in television production. Rather than flying south where retirees typically flock, Jackie headed west. It was a day she thought she would never see, because she lives with sickle cell disease.

Sickle cell anemia is a serious inherited blood disorder of persons of color, in which oxygen-carrying red blood cells are stiff and "C" shaped rather than round, causing difficulty moving through blood vessels. Sickle cells clump together, causing severe pain episodes, blocking blood flow to limbs and organs. It can cause infections, organ damage and can be life-threatening.

In the U.S., the Centers for Disease Control and Prevention estimates 90,000- 100,000 cases of sickle cell. The disease occurs in one out of every 500 African American births.

"Indescribable joint pain" is how Whitney calls the sickle cell crises.

"Usually the pain would start in my arms or my legs and they were so extreme, that my father would take me over to the hospital, and of course, the doctors had no idea what was going on, but the usually treatment was they usually end up giving me a penicillin shot," Whitney recalls. "Most of the time, while I was at the hospital, after about a few hours, the pains would subside."

When Whitney was 8 years old, Dr. Helen Nash of St. Louis provided her and her parents with news that would shape the rest of her life.
"She explained to me that it was hereditary - that the only way you can get sickle cell disease is that someone in your family has to have either full-blown disease or they have the trait of it.

And, that I probably would still experience the same types of pain and episodes that I had been experiencing all of the early part of my life," she said. "After taking a big breath she said, 'I will tell you that most people who have this disease never live past their teens.'"