Sickle Cell Awareness Must Continue Beyond September 30th

Sickle Cell Awareness Month ends each year on September 30th but, it shouldn't stop there.

Sickle Cell Disease (SCD) deserves to be talked about all year-long from warriors, parents, caregivers, supporters and doctors. Unfortunately, due to health-care disparities and racism, sickle cell disease, oftentimes doesn't receive the much-needed conversation that it requires. In order for education and awareness to increase, something must change across the world. The (SCD) community as a whole, must take every opportunity that is given to them, to speak up and talk about SCD.

Did you know that in the United States, more than 100,000 people are diagnosed and live their lives with sickle cell disease, each and every day? In the state of Michigan alone, there are approximately 4,000 individuals who are "sickle cell warriors", a common name that sickle cell patients refer to themselves as. What about this fact, did you know that over half of all Michigan counties are home to people living with sickle cell disease (SCD), that's according to the Sickle Cell Disease Association of America, Michigan Chapter, also known as (SCDAAMI). Yes, this includes rural counties as well, where warriors face longer drive times in order to travel to receive major health care centers/facilities and treatment.

What exactly is Sickle Cell Disease? According to the Office of Minority Health and Health Equity, sickle cell disease is an inherited blood disorder that can cause anemia, severe pain, infections, organ damage, and stroke. It is a lifelong condition that primarily affects Blacks, Africans, African-Americans, Hispanic and Latino populations but is certainly not unseen in those individuals who genetics derive from areas such as Southern Europe, Middle-Eastern, India and other places around the world.

Sickle cell disease, receives its name due to the sickled-shaped red blood cells, much like the shape of a crescent moon, farmers sickle, or a banana. Due to its shape, sickle cells are stiff and sticky and can get stuck in blood vessels and clog the blood flow. That prevents oxygen from getting to parts of the body. This blockage can and quite often does cause pain. Damage to organs, life-threatening complications, and even early mortality can occur because of this illness.

Located in the heart of the city of Detroit, (SCDAAMI) is not limited to helping Detroit residents only, but they are a resource for all Michiganders, who live with sickle cell disease. Each year, the (SCDAAMI) staffers worked so tirelessly, to ensure proper planning and preparation takes place for the annual "Sickle Cell Awareness Walk". This year, hundreds of people walked in support of "Sickle Cell Awareness" and more than $100,000 was raised for a worthy cause. Mark your calendars for next year, because, the walk is scheduled for the 2nd Saturday of September.

Merely, just a couple of weeks ago, the SCDAA and its supporters, traveled from across the state to meet-up and attend the Health Policy & Advocacy Summit Day, in Lansing, MI. The purpose of this summit was for warriors, doctors, parents and caregivers to share their heart-felt stories and experiences to increase awareness and education amongst state legislators.

While being at the state's capitol, break-out sessions and meetings occurred between the group and state representatives along with state senators. Dr. Wanda Whitten-Shurney, CEO and Medical Director of the Sickle Cell Disease Association of America, MI Chapter, gave the room insight as to how patients are viewed and treated in the ER, myths surrounding the disease and who "warriors" really are to the world and their communities.

Dr. Whitten-Shurney said, "Sickle Cell Warriors are doctors and lawyers, educators, journalist, mothers and sons, parents and godparents. Another myth is that all of our warriors are drug seekers, the hallmark of sickle cell disease, is pain. When a warrior goes to the emergency room, it's stated, oh you just want narcotics. No, I didn't come to just get narcotics, I came here to get pain relief."

Did you know that with support from state legislators and the MDHHS, the Sickle Cell Disease Association of America MI Chapter is leading the way to partner in the development of Michigan's first ever SCD Center of Excellence. This endeavor will reshape the care provided to Michiganders with SCD to improve health outcomes across Michigan.

"Our fight doesn't end on September 30th, it's a constant battle each and every day. That is why it takes a village to care for a sickle cell warrior", says Michigan Sickle Cell Warriors. The message, it's imperative to know because, then and only then can impact and change happen so that we can continue to evolve for the entire sickle cell community. That there, is the message, for everyone to know!

The Sickle Cell Disease Association of America, Michigan Chapter mission is to:

• maximize the life potential of individuals living with sickle cell disease

• To enable individuals with sickle cell trait to make informed decisions with respect to family planning

• To provide education and testing for the general public

For more information, please visit, http://www.scdaami.org, there you will find ways in which you can become a supporter.