sickle cell patient stayfresh ali

“StayFresh” Ali

Sickle Cell warrior Tahir "StayFresh" Ali of Atlanta, GA, visits the hospital twice monthly for blood transfusions to reduce complications from sickle cell disease, and manage his potential risk of organ damage or stroke. The 35-year-old music producer and manager estimates he has spent several years of his life in the hospital undergoing treatment for sickle cell disease. Finding a perfectly matched marrow or blood stem cell donor could give StayFresh a chance to live life free of sickle cell and the many complications that the disease presents.

September is Sickle Cell Awareness Month, and Be The Match, the National Marrow Donor Program, is launching several campaigns to help people learn more about the disease, and take action to help those searching for a matching blood stem cell or marrow donor.

StayFresh is like 100,000 African Americans who battle sickle cell disease, an often-misunderstood genetic disease that is "invisible" because unlike many illnesses, people with sickle cell disease can lead active lives. However, people with severe sickle cell can face debilitating episodes of pain crisis and life-threatening complications. StayFresh is working with Be The Match to rally more Black and African Americans to join the Be The Match Registry.

Discovered in 1982, a successful Bone marrow (stem cell) transplant is the only treatment available today that can cure sickle cell disease. Part of the challenge Black patients face when searching for a perfect match is low representation of Black or African Americans on the Be The Match Registry. Of the 22 million potential donors on the Be The Match Registry, just 4% are Black or African American. Because ethnicity plays a role in finding a match, Black patients will only find a perfect match 23% of the time, which is much lower than other ethnicities, such as White patients, who will find a match 77% of the time.

Donating bone marrow is a fairly easy process with a quick recovery. The less invasive peripheral blood donation can be done by a simple blood draw, while the bone marrow donation is a minor surgical procedure. The latter involves removal of bone marrow from the hip bone. It can be painful but it is done under anesthetic to make it more comfortable for the donor.

Bone marrow donation is a safe procedure but does carry a low risk of potential pain and infection, and risks associated with anesthesia. Some donors can feel tired after donating their bone marrow which can take days to weeks to resolve. Once your stem cells are donated, your body will replenish your supply within six weeks.

Compare what you would go through to the life of 4-year-old Ruby from Lubbock, TX, who has been hospitalized more than 24 times and had three surgeries due to her sickle cell. Ruby's doctors are recommending a blood stem cell or marrow transplant due to the severity of her condition, but she does not have a perfect match on the Be The Match Registry.

Ruby isn’t alone. According to the Centers for Disease Control, sickle cell disease is the most common inherited disease, affecting 1 in 365 Black or African Americans and 1 in 16,300 Hispanic Americans. With sickle cell disease, oxygen-carrying red blood cells are misshapen, hard and sticky, which can result in them getting stuck in blood vessels and clogging them. This can cause severe pain crisis, infections, organ damage, low blood counts, strokes and other serious health problems.

Be The Match has launched an informative online video called "You Are My Match" to raise awareness of the need for more Black or African American donors on the Be The Match Registry to help Black patients battling sickle cell disease find a potentially life-saving match.

To learn more about being a bone marrow donor, join Be The Match for the virtual series. In three episodes, they’ll work to raise awareness about sickle cell disease, provide free resources for patients and families affected by sickle cell, discuss treatment options, and the need for more Black donors on the Be The Match Registry. The event series and more information can be found at: SickleCellConnect.com. While you’re there, you can access free resources, read stories about people cured of sickle cell disease following a marrow or stem cell transplant and join the Be The Match Registry.

Virtual Sickle Cell Series:

Episode 1: What is Sickle Cell Disease?

Sept. 10, Noon – 12:30 p.m. CDT

Will chat about sickle cell disease basics with pediatric hematologist Staci Arnold, MD, hear sickle cell warrior Genesis' story and learn about barriers and disparities that sickle cell patients face from the Health Equity Manager at Be The Match.

Episode 2: Living with Sickle Cell Disease

Sept. 17, Noon to 12:30 p.m. CDT

Will chat with a Be The Match Patient Navigator and Social Worker about the free resources available to sickle cell disease patients and hear from the founder of My Three Sicklers Foundation.

Episode 3: The Future of Sickle Cell Disease

Sept. 24, Noon to 1 p.m. CDT

Will cover transplant and gene therapy with Staci Arnold, MD and a certified genetic counselor from Be The Match. Hear about policy efforts for sickle cell disease, meet sickle cell warrior Dakhiyon, see how Nia Imani Franklin, former Miss America, is advocating for more diverse donors on the Be The Match Registry, plus watch a live swabbing event.

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