August 26, 2008
Sickle Cell Adults Suffer in Shadows
By Wendi C Thomas
Just to look at them - Shevett Pratcher, Kelsey Stinnes and Jamena Polk - you'd never know what their lives are like.Their smiles come easy, their sense of humor is intact, despite living with the debilitating disease of sickle cell.
On Wednesday, Pratcher and Polk were at the Diggs-Kraus Sickle Cell Center at the Regional Medical Center at Memphis, Pratcher because of leg pain and Polk for an IV of fluids to help rehydrate her as she's weaned off pain medication.
Stinnes, 49, came in just for the interview - but almost didn't because of the day's dreary weather.
"Today is probably a very bad day for sickle cell patients, because it's cold and rainy," said Anita Larkin, nurse manager for the center, one of fewer than 10 such centers for adults with sickle cell in the country.
Even the chilly temperature can set off a crisis - an episode of extreme pain.
When we tend to think of sickle cell, if we think of it at all, we think of children with the disease. And that's understandable, as the disease can shorten life expectancy.
The disease is so named because of the red blood cells' tendency to contort themselves into the form of crescent-shaped cells. These misshapen cells block blood vessels, keeping oxygen from reaching parts of the body, which can cause problems all over, including blindness, joint damage and organ failure.
Black people are more likely to carry the trait or have the disease, as are those with Mediterranean ancestry; all but one of the patients at Diggs-Kraus is black.
But with better treatment, people with the genetic blood disorder are living longer. That's a blessing, but it comes with the complications that accompany longevity.
Like hip replacements. In your 20s.
A few years ago, Polk's spine started to hurt. That, she learned, was common for sickle cell patients around her age. Then, it was her hips. That, too, was to be expected.
When she is forced to use the electric cart at a shopping center to get around, "y ou get a lot of crazy looks," says Polk, a newlywed who looks younger than her 25 years. "I know (other shoppers are) wondering, 'Why are they letting her ride around in that?'"
Sometimes, the three agreed, it might be easier to have a disease that was visible. A bald head that spoke of cancer. A missing limb that made their disability obvious .
The only marker is jaundiced eyes, but today, these patients' eyes are clear.
Still, none of them are able to hold down jobs. Their crises can come on without warning, spurred by stress or the weather or anything at all.
Polk, a manicurist, chose a career that would allow her to work for herself, as employers aren't always understanding.
"You were fine just two minutes ago and now you're in pain?" she says, imagining what an incredulous boss might say.
Pratcher, 37, who lives with her mother, has written a book about a little girl with sickle cell who encourages others to donate blood, as sickle cell patients often require frequent transfusions. (You can find Pratcher's book, "Annie Jane," at Xlibris.com.)
When Stinnes was 10, he was told, "You're not going to live to see 20. When I got past 20, I was like, 'I'm still here!'"
The Diggs-Kraus center has 33 patients over 50. The oldest is 73.
Of all the genetic disorders, said Vanessa Steele, the center's social worker, "sickle cell is at the bottom of the totem pole." There's no state funding for it like there is for hemophiliacs, there are no telethons, and adult patients who look healthy don't make poster children for fundraising.
None of that matters to the Memphis chapter of the Pro Duffers golf club.
The group has been holding a charity golf event to benefit Diggs- Kraus for the last eight or so years, although the tournament itself is 36 years old.
And the money they raise - at least $10,000 each year - "we want to be sure that it goes to the patients," says Dr. William Terrell, a pediatrician and organizer of this year's tournament.
"We don't want to paint buildings or pour concrete."
In the past, money has gone to buy backpacks for students in college, to help pay for medicine, even to help with patients' utility bills.
The golfers are annual angels for these adults surviving - often in silence and in the shadows - with a devastating, incurable disease.
Contact Wendi C. Thomas at 529-5896 or e-mail [email protected]
For related links or to read past columns, go to commercialappeal.com.
Still time to sign up
To participate in the Walter Evans Memorial Sickle Cell Golf Tournament next Saturday and Sunday at the North Creek Golf Club, 8770 North Creek Blvd., Southaven, Miss., call organizer Dr. William Terrell at 866-2131.
Or go online to produffersusa.org and click on Memphis under "Geographical Locations."
To read an account of a golfer's experience with the Pro Duffers, go to commercialappeal.com and click the link on this column.
Originally published by Wendi C. Thomas .
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