Men and women stood in a circle and held hands Saturday as they prayed to open the monthly meeting of the Sickle Cell Support Group.

"Bless everybody that's here and their parents," said member Mary Medaries, who has an adult daughter with the disease. "Bless the patients."

The group brings together patients and families of patients from around the area, who gathered on folding metal chairs in a room at 2600 West Muhammad Ali Blvd. There are about 50 members, but many don't attend all the meetings.

Carl and Valicia Starks told me they try to go whenever they can, but their plans are often upended by the unpredictable nature of their son Terrell's illness. Terrell had a difficult time this week, Valicia said, and they ultimately weren't able to make it to this meeting.

But the others who were there said they draw comfort, and get needed information through the group. They share stories, commiserate and hear from speakers on issues such as disabilities in school.

"It's really a listening session and an info session," said Stacy Sowell, president of the group.

Sowell and Medaries said the group is like a family. Members call each other when a patient is hospitalized, send cards, offer words of encouragement or advice. Medaries said she has tried to offer support to Valicia in recent weeks, as her son struggles through the last stages of the disease.

Saturday's meeting featured two speakers -- on disabilities in schools and on protecting the rights of the disabled. But much of the discussion among members focused on their desire for better care for adult sickle cell patients. Several people pointed out that medical professionals often view sickle cell patients as drug-seekers because they go to various doctors to find the one best at helping them deal with their pain. Medical professionals have admitted to me that this misconception is common among their ranks.

Members also said they'd love to see a doctor in the Louisville area start a center for adult sickle cell patients -- or even just devote all their time to these patients and become the local expert.

And even beyond the medical community, they said, the disease is something everyone needs to care about.

(Photo: Leslie Jones, right, a senior staff attorney with Protection & Advocacy in Frankfort, speaks during a meeting of the Sickle Cell Support Group in the West End of Louisville.
(By Sam Upshaw Jr., The Courier-Journal)
Mar. 20, 2010)