Did You Know About the Sickle-Cell Cure?

Sheree Crute is an award-winning writer and editor who covers a broad range of health topics and specializes in consumer and multicultural health. She is currently a University of Southern California/Annenberg School of Communications National Reporting Fellow and is a member of CHMP’s National Advisory Council.

This article was first published on December 5, 2011 in The Root.

Did You Know About the Sickle-Cell Cure?

Health Breakthroughs: A series on treatments that help blacks but are out of reach for many.

The first thing you notice about Andrew Chase is his mischievous grin and laughing eyes — hallmarks of a typical, happy 15-year-old. “I like playing basketball, helping my mom cook, and I like to write,” he says. It’s only when you speak to Andrew’s mom, Syreeta Chase, that you realize he is anything but average.

“He doesn’t really talk about it,” Chase says, her voice filled with both admiration and deep affection for her eldest child, “but Andrew was diagnosed with sickle-cell anemia when he was 3 months old. At age 3 he had his first major stroke. For a time he was unable to walk. At age 5 he developed moyamoya [a rare brain disease caused by sickle-cell complications], and since about age 2, he’s been in and out of the hospital several times a year for transfusions, treatments for iron overload, and he has repeated viruses and fevers.”

Having sickle cell means that Andrew is also missing out on just being a teen. “I can’t do certain activities. I have chronic headaches, and I can’t just run around like other kids,” he says. That means even though Andrew — who is small for his age because of the disease — triumphed over his illness and made the county basketball team, he had to stop playing to protect his health.

Unwilling to spend his youth on the sidelines, Andrew, at age 10, shocked his mom by announcing that he wanted to have a stem cell transplant.

“I said, ‘Absolutely not,’ ” says Chase, who had Andrew as a single 17-year-old and has fought hard to get him the best care. “I was just too afraid.”

Her fear was understandable. Stem cell transplants are the only cure for sickle cell, but there are serious risks, such as transplant-related illnesses. And in about 5 percent of cases, patients may die. “But,” Chase says, “I finally realized that Andrew was tired, so I said yes.”

In 2009 Andrew and his family began his long journey toward a cure. “It takes careful planning, a lot of support, qualifying for a clinical trial and grueling chemotherapy to prepare Andrew’s immune system,” explains Chase, who works in records at a law firm near her Waldorf, Md., home.

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Sheree Crute is an award-winning writer and

Africa HEART

Senior Fellow, Nancy Cabelus, DNP, MSN, RN, is an international forensic nurse consultant currently working with Physicians for Human Rights on a program addressing sexual violence in conflict zones in central and east Africa. She will be reporting from Kenya over the next several weeks. Here is her first post.

December 2, 2011. Nairobi, Kenya: Rain could not stop the outpouring of generosity and support for Africa HEART.

I arrived early in Kenya for my work with Physicians for Human Rights  which I will write more about in the coming weeks. I previously spent 2 years living in Kenya working on gender violence issues and developed relationships with many amazing Kenyan people and organizations. This week we’re in the middle of a global campaign known as 16 days of activism against gender violence campaign and on December 1, World AIDS Day is honored each year. How fitting that my dear friend Vickie Winkler, an American nurse and founder and executive director of Africa HEART (Health Education Africa Resource Team) invited me to attend a dinner of celebration and fundraising to mark HEART’s eleven years of service in Kenya. Despite extraordinary rain this season that caused Lord Errol’s staff to push the event from outdoor tents to an indoor dining room, guests arrived with outpouring  generosity and support for HEART’s mission “to empower the people of Africa to survive the HIV/AIDS pandemic.” This event was HEART’s first fundraising event in Africa. Local business leaders and health care professionals listened as radio celebrity Caroline Mutoko made an eloquent and powerful speech about restoring the dignity of girls and women through HEART’s programs. She encouraged guests to reach for their checkbooks and to continue to support the amazing work of HEART.

HEART’s WEEP Project (Women Equality Empowerment Project) identifies mothers who are dying from advanced stages of AIDS, provides them with medical care and nutrition, and infuses them with life. The project spares children from becoming orphaned and often provides children with school uniforms and resources needed to attend school. Evelyn, a recent graduate of the WEEP program told guests that she was diagnosed with HIV ten years ago. She had never even heard of the disease before. When she learned what her prognosis was, she believed she would not live for long and that her children would be raised by their grandmother. At that time, there were no anti-retroviral (ARV) drugs available to her. With the help of the WEEP project, Evelyn tells how she is living positively and that she has recently seen her oldest child graduate from secondary school.

As I anticipate the arrival of my project team members to arrive in Kenya this weekend, I also look forward to telling about the launch of PHR’s project in Africa targeting sexual violence in conflict zones. Stay tuned.

Nancy Cabelus, DNP, MSN, RN

Senior Fellow, Nancy Cabelus, DNP, MSN, RN,

design and disability

As a fan of both good wine and design, when I turned to the Wall Street Journal’s wine columnist, Lettie Teague’s column, Drinking with Michael Graves, I thought bingo! here comes a good read.   I’m a big Michael Graves fan.  We own a Michael Grave’s Alessi teakettle with a red bird that tweets (not the Twitter-kind) when the water has boiled. He has designed 1000s of objects (for Target too), buildings, and public spaces, but Ms. Teague mentions the teakettle in the first paragraph. It’s a favorite of many.

There’s a wonderful photo of him in a dark purple shirt and red vest sitting in a high-back black upholstered chair at a table topped with two bottles of wine and several half-filled wine glasses. He’s holding up a glass of red wine and has a warm smile on his face.  About a third of the way into the article I learn that nine years ago Mr. Graves suffered with an infection that left him partially paralyzed. It’s mentioned in the context of how his illness has limited his wine to one glass per day. This sentence forced my eye back to the photo – my lens has changed and now I see that the high-backed chair is a wheelchair not a designer kitchen chair.  My focus shifted from the wine to this man’s current health status, his abilities and disabilities. Now, the wine took second stage.

We learn about his vineyard and the wineries he’s designed but I want to hear more about how he lives with his disability. Then there’s the sentence that mentions Mr. Graves is now designing products for people with disabilities.  I finish the column and head to my laptop to Google and find a link to his latest product line, Michael Graves Solutions. In 2009, Michael Graves formed a design partnership with Stryker Medical to design the patient hospital room. There are images of the new line that show his distinct identity and are worth checking out.

Journalist John Hockenberry, who has been paralyzed for 30 years after a car accident, writes about his relationship with Graves in The Re-Education of Michael Graves. Here’s a quote from Graces from this article:

“People who become disabled have to radically redesign their outlook about the physical world,” Graves says, remembering the first days after he was out of danger and learning to live with paralysis. “They redesign their sense of privacy and their sense of independence. Yet in the products they have to use, design has abandoned them.”

He already has a line of heating pads and shower seats with much more to come.

Mr. Graves, thank you for the beauty of design and function you give to the world  and for expanding your reach to include those with mobility challenges.

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