Health

Accept Your Own and Be Yourself: Lessons for fighting Sickle Cell Disease

By Tahirah X Austin -Guest Columnist- | Last updated: Nov 7, 2014 - 12:03:49 PM

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The month of September is marked for Sickle Cell Disease (SCD) Awareness. Each year, the Sickle Cell Disease Association of America promotes awareness events and blood drives for those stricken with the life-threatening illness and the events take place through different SCDAA chapters across the nation and through other community-based organizations. 

In recent weeks, campaigns have launched via social networks such as Instagram and Facebook to bring awareness to this illness.

But how aware are we really about the seriousness of Sickle Cell Disease among our people?

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According to the National Heart, Lung and Blood Institute, sickle cell anemia is the most common form of sickle cell disease and the most common genetic disorder that is inherited. Sickle Cell Disease is a serious disorder in which the body makes sickle-shaped red blood cells. “Sickle-shaped” means that the red blood cells are shaped like a crescent. Normal red blood cells are disc-shaped and look like doughnuts without holes in the center. They move easily through blood vessels. Red blood cells contain an iron-rich protein called hemoglobin. This protein carries oxygen from the lungs to the rest of the body.

Sickle cells contain abnormal hemoglobin called sickle hemoglobin or hemoglobin S. This hemoglobin causes the cells to develop a sickle, or crescent, shape. Sickle cells are stiff and sticky. They tend to block flow in blood vessels to the limbs and organs. Blocked blood flow can cause pain and organ damage. It can also raise the risk of infection.

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Sickle cell anemia is most common in people whose families come from Africa, South or Central America (especially Panama), the Caribbean islands, Mediterranean countries (such as Turkey, Greece, and Italy), India, and Saudi Arabia.

In the United States, it’s estimated that sickle cell anemia affects 70,000–100,000 people, mainly Black Americans. Due to the increased number of Blacks who have sickle cell disease in the U.S., the disease is often stigmatized as “the Black disease” or “the forgotten disease” and those who seek medical assistance are often turned away because they have been labeled “drug-seekers” by an industry of professionals who deem themselves as “knowing” the disease better than the patient who is living with the disease.

Sickle cell disease occurs in about 1 out of every 500 Black births.

It also affects Hispanic Americans. The disease occurs in more than 1 out of every 36,000 Hispanic American births. More than 2 million Americans have sickle cell trait. The condition occurs in about 1 in 12 Black Americans.

With so many celebrities, athletes and even politicians who are affected with or by SCD we should see awareness campaigns on our televisions, at concerts, in the news and our papers; however, those awareness campaigns do not exist.

At times it seems as though Black America will support everything and anything except their own.

In the months of July through September, many Black celebrities, athletes and musicians jumped on board to participate in the ALS “Ice Bucket Challenge” to promote awareness for Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease.

The challenge spread like wildfire onto every social network platform that existed, even those who had never heard of the disease participated. Participants included Black Americans who had no clue that 30,000 Americans are affected by ALS disease at any given time. According to the ALS CARE Database, 60 percent of people with ALS in the database are men and 93 percent of patients in the database are Caucasian. But Blacks contributed and helped raise over $100 million in donations, according to the International Business Times. Meanwhile Sickle Cell Disease Awareness Month campaigns struggled to raise $1,000 for research in the month of September.

Where do we go from here to educate our own about the diseases that affect our community? The Most Honorable Elijah Muhammad said in “Message to the Blackman in America,” “know thyself and be yourself … the Believers in truth, Islam, must stop looking to the White race for justice” or anything of the sort when we should be helping and educating our own. He went on to advise, “if there are six or eight Muslims with knowledge and experience … pool your knowledge and work collectively and harmoniously.”

There is no other way to educate our own except to utilize those who have the knowledge to teach and bring awareness to diseases like sickle cell to our mosques and our communities. When we speak about health and “How To Eat To Live,” the diseases and disorders that afflict our communities should be spoken of as well with plans to combat the illnesses and/or fund the research to those who are studying to make the lives of those living and fighting daily with Sickle Cell Disease pain free.

September is Sickle Cell Disease awareness month, know your status and become aware of the genetic disease that affects our own.

(Tahirah X Austin, based in Philadelphia, is an advocate for education, research, funding and services to help those who live with Sickle Cell Disease.)