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Sickle Cell Disease Close to Home

Sept. 19, 2005 — What is sickle cell disease?
It is an inherited red blood cell disorder that can cause painful crises, anemia, life-threatening infections, and damage to your body's major organs over the span of your life. It's not contagious. You get it from your parents. When two parents carry the trait, there is a 50 percent chance with each preganncy that any child born to them will have the sickle cell trait. With each pregnancy, there is a 25 percent chance that any child born to them will have sickle cell disease. With each pregnancy (get the point now?) there is a 25 percent chance that any child born to these parents will have neither the trait nor the disease. The only cure for sickle cell disease is the high-risk, stem cell transplant procedure, using stem cells donated by siblings who are a perfect genetic match. In the United States, one in every 500 African-Americans has this disease. (For more, go to the March of Dimes Web site.)
I have a child with sickle cell disease. How many of you knew that? Probably quite a few. But it really doesn't matter – it doesn't hit home – until you are the person who watches, waits, hopes for and listens to the person who is living with this challenging disease on a daily basis.
"She has what?" they ask.
"Sickle cell disease," I say. "Do you know what that is?"
"It's a 'trace,' right?"
"No, it's not a 'trace,' it's a very debilitating chronic illness."
Every day people ask me these questions and make these statements. They're not silly, just entertaining. I answer them every time they are asked of me, nonetheless, for we must have patience with the way human beings ask questions about things they don't know:
Nina is my daughter's name. She's 6 years old, going to be a second-grader, and if you didn't know, now you know!
"Well, gosh," they say, "She looks well!?!"
Well, as long as she's running around, she is well, let her run around! Just keep an eye on her. Make sure she doesn't over exert herself. Make sure she's drinking enough water, as she can easily become dehydrated, and dehydration leads to painful sickle cell crises that can require hospitalization. Thank the Lord, Nina is well!
"My goodness," they say, "She can't be sick, she's so pretty!?!"
Yes, as a matter of fact, she is – pretty, I mean. Folks, you don't have to be ugly to have sickle cell disease. Nina is a beautiful child, just like her grandmothers, her aunties and all her cousins all around her. Really, she's not 'sick,' she merely lives with a chronic illness that can cause excruciating, allover painful crises, deadly bacterial infections, debilitating bone and joint degeneration, leg ulcers, stroke, splenic sequestration syndrome, chest syndrome, painful priapism (in males) and many other horrific pain-related, degenerative conditions. Sickle cell disease is always waiting in the wings, to the unsuspecting person of African, Hispanic, Greek, Maltese, Italian, Sardinian, Turkish, Indian, Arabian, or just generally, Mediterranean descent. My daughter makes people think about this disease. She could be the national spokesperson for sickle cell disease, like Tionne "T-Boz" Watkins of the R&B group TLC. I thank the Lord, Nina is pretty!
"Well, but, gee," they say, "She's so smart!?!"
"Well, what did you expect? Look at who and where she comes from!" This is usually my modest response as a proud, intelligent woman, from a family of proud, intelligent women (and men – Bobby, Daddy, Grampy, Grandaddy can't forget you now, but we're talking about the girls, so please excuse us!) The sickle cells don't affect her brain – you know, only her pain! Nina wants to be an architect, a scientist, a performer, and a hospital manager! Thank the Lord, Nina is smart!
"But, she runs around and plays just like any other kid!?!
Yes, as a matter of fact, she does. Why? God has blessed Nina with more days where she can function through her pain. In fact, thank goodness, she has that Lewis hereditarily high-tolerance for pain that her father and I joke about. Sometimes, while working around thehouse, Kevin might cut his hand, and doesn't even realize it until I ask him where the blood that's running down his arm came from. I know that all you Lewis family members out there reading this are laughing about it, because you know your Grandfather taught you to be tough! Well, Nina swims and she dances! Thank the Lord, Nina is tough!
Many individuals living with this chronic illness have a higher-than-usual tolerance for pain. Just because they don't look like they're in pain, doesn't mean they're not. Oftentimes she comes to me, in the evening, saying, "Mommy, I have pain!" My response is usually, "Well, where is it, baby?" And she usually starts to describe the location of the pain in her body by pointing to the top of her head, and then to the bottom of her feet, as if to say, "I hurt all over, Mommy". While she's describing her level of pain, and the location of the pain, she still has a great attitude; she's still smiling, still playing with her brother, Amahl, and still asking to watch Nickelodeon, Disney or Food Network (her favorite TV Channels).
We deal with it. We have a hot bath, read a book, have a nice massage, and then open up the bottle of Motrin for her usual, nightly dose before she goes to bed. If the pain is really bad, we add a little Tylenol with Codeine to her cocktail so that she can sleep peacefully, pain-free, and regenerate herself for the trying daily work of the average six-year-old. Thank the Lord, Nina sleeps through the Night!
"How do you do it?" family, friends and co-workers ask.with your support, which our family thanks you for! But more importantly, I thank God for Nina every day! She is a blessing! She lifts my spirits with her wonderful attitude, which is always full of wonderment, care, and concern. Thank the Lord! Nina is my child!
Do you know Nina? Well if you didn't know, now you know! Thank the Lord! Nina is the best!
If you're interested in learning more about sickle cell disease, I will teach you. I will teach all of you, here in my native Virgin Islands all about it. My goal is to educate you about the silent challenge that many families in and around the Virgin Islands live with on a daily basis.
To learn a little more about it, and learn whether or not you carry the sickle cell disease trait, ask your parents. But if they don't know, check with your local hospital, health clinic, or your physician. Learning whether or not you carry the Trait only requires a simple blood test.
On the Internet, go to www.sicklecelldisease.org the official Web site of the Sickle Cell Disease Association of America. If you or someone you know is approaching or at child-bearing age, take a look at the March of Dimes Web site.
Please make a tax-deductible donation, to supports people living with sickle cell disease in our community by mailing it to the St. Thomas -St. John Sickle Cell Disease Association, P.O. Box 306395, St. Thomas, VI 00803.
September is National Sickle Cell Disease Awareness month.
Christine deJongh-Lewis, MPH
Mother of Nina Lewis

Editor's note: Christine deJongh Lewis, director of Patient Relations for the Roy L. Schneider Hospital, speaks here wearing the hat of a mother of a child with sickle cell disease.
We welcome and encourage readers to keep the dialogue going by responding to Source commentary. Letters should be e-mailed with name and place of residence to source@viaccess.net.

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