Sandra Affare, Sickle Cell Corporation says "Sickle Cell doesn't have a brand."
While Sickle Cell Anemia is consided a rare disease, unfamiliar to a lot of people, That's certainly not the case for one segment of the population. One out of every 12 African Americans carry the sickle cell trait.
Sandra Affare says "My husband is a trait carrier and my brother-in-law has sickle cell disease."
Sandra says her husband Gabriel found out during their engagement. Both she and her daughter have been tested, neither is a carrier.
Sickle cell disease is an inherited blood disorder. It causes red blood cells to form into a crescent shape, like a sickle. These red blood cells break apart easily, causing anemia. The damaged sickle red blood cells clump together and stick to the walls of blood vessels, blocking blood flow.
This can cause severe pain which is known as a sickle cell crisis. It can also lead to permanent damage to areas like the brain, heart, and kidneys.
Extreme pain in the hands, feet, abdomen or chest are some of the most common symptoms to look for.
Sandra is the founder of the Sickle Cell Corporation.
Sandra Affare says "The purpose of the organization is to provide that support or transitional care from adolescence to adulthood."
Which she says is important because older patients don't receive the same level of support, which greatly impacts their quality of life.
Babies born after 1992 are now tested for sickle cell, which prepares families on what to expect and a treatment plan. Doctors are now seeing more cases in Hispanics. Sickle Cell Disease is a life-long illness. The severity of the disease varies widely from person to person.
It is proven with lifestyle change that a person can have a productive lifestyle living with sickle cell as we've known with the late great Miles Davis.
With advances in diagnosis and treatment, the life expectancy of a person with sickle cell disease is now between the ages of 40–60.
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