Getting the word out: Seminar, walk put spotlight on Sickle Cell disease – Dothan Eagle

Sickle Cell disease has long been referred to as a black persons disease. But that is not the reality. According to the National Institutes of Health, There are also many people with this disease who come from Hispanic, southern European, Middle Eastern or Asian Indian backgrounds.

The need to educate the public to the dangers of this disease and how pervasive it has led to the creation a two-day local event that will be held Sept. 22-23 as part of National Sickle Cell Awareness Month.

Our sorority, Kappa Alpha Kappa (Kappa Pi Omega Chapter), and the Community Awareness Foundation have read a lot of information about this disease, said Linda Garrett, president if the Community Awareness Foundation. We have realized, especially in the medical community, there is a disconnect. This has always been viewed as a black persons disease. Predominantly a black persons disease, yes, but any human being can get this disease.

The disease, according to NIH, is not contagious. A person cannot catch it, like a cold or infection, from someone else. It is an inherited disease, which means that the disease is passed by genes from parents to their children.

Sickle cell disease is caused by a group of inherited red blood cell disorders causing abnormal hemoglobin. The importance of hemoglobin is that it carries oxygen to all parts of the body. The most common and many times the most severe form of sickle cell disease is sickle cell anemia.

Garrett notes the concern about this disease grew from early community conversations.

The discussions began on a knowledge level, Garrett said as she began to give the background to what has grown into a two-day awareness and fundraising campaign. We started educating the community. In 2007 we forged a partnership with Southeast Alabama Medical Center, which is how we started the lecture series. We scheduled professionals (in the field) to talk about the disease.

The invited speaker for this years event is Tim M. Townes, PhD, from the Department of Biochemistry and Molecular Genetics at the University of Alabama at Birmingham. His lab research focus is the Development Regulation of Gene Express.

From the lecture series we moved to making donations toward helping the clients in the area who have sickle cell disease, Garrett continued. We work with the Southeast Alabama Sickle Cell Association, which covers 10 Wiregrass counties (Barbour, Bullock, Dale, Geneva, Henry, Houston, Lee, Macon, Pike and Russell). We help raise funds for things like client medications, trips to the clinic at the University of South Alabama. The state has two comprehensive health centers, South Alabama, which covers our area, and UAB. Clients can go to Birmingham, if they choose to do so. Research in this disease is being done at both. Weve involved professionals from both facilities.

While a lecture series educates a portion of the community, Garrett says more was needed to broaden the scope of community awareness of the disease.

In 2011, because we wanted to educate the community, we started the walk-a-thon, she said. We want to raise the publics awareness of this disease and to also raise some funds to go to SEASCA. They do a lot for their clients. They handle personal issues for their clients.

Garrett believes public awareness of the dangers of sickle cell disease is vital.

This is a disease that affects children and adults, she said. Today, every (newborn) baby is pre-screened for sickle cell disease. The centers (USA, UAB) are notified if a trait for this disease is found. The families are also notified. The childs name is placed in the network, which will allow the parents to receive guidance and treatment (for their children).

This will mark the seventh year for the Sickle Cell Walk-a-Thon, which will be held Saturday, Sept. 23, at the Westgate Park Walking Trail. Registration for the event will be held from 7:15-8:15 a.m. Warm-up will begin at8:15, followed by a walk on the trail from 8:30-10:30 a.m.

Weve gotten really good participation, Garrett said. It continues to grow every year. Our efforts to raise awareness and to impact the community in a positive way have been successful. Public awareness is important. Its almost like this has been a silent disease.

Garrett says there are other avenues that need to be pursued to continue the education and awareness efforts.

We really need to work on our schools understanding that these children (afflicted with sickle cell disease) need nurturing to get them through the crises (caused by the disease), Garrett said. We hope to get our school nurses more involved.

Its only fitting, Garrett notes, that the Alpha Kappa Alpha Sorority and its nonprofit arm, the Community Advancement Foundation, would take a lead role in this effort.

This is an opportunity to have compassion for fellow humans, Garrett said. The Alpha Kappa Alpha mantra is Service to all mankind. The fact that this is a service opportunity that positively impacts the lives of a segment of our population that suffers is awesome. As you can tell, Im very passionate about this. I have a niece who has sickle cell. Shes in law school now. It requires a very supportive network for a child to manage this illness and lifes goals at the same time. Not all children with this disease have that support. Were trying to open doors to level the playing field.

The two-day Sickle Cell Awareness Campaign is sponsored by the Community Advancement Foundation, Alpha Kappa Alpha Sorority Inc. (Kappa Pi Omega Chapter, Life South Community Blood Centers, Southeast Alabama Medical Center, Ta-Seti Shriners Temple #253 and the Southeast Alabama Sickle Cell Association Inc.

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Getting the word out: Seminar, walk put spotlight on Sickle Cell disease - Dothan Eagle