The month of Sept. is special because it brings light to a disease not widely known in mainstream media.
Sickle Cell is a disease that is estimated to affect 90,000 to 100,000 Americans. There’s plenty of information around about the disease, but not enough people talking about it or even know much about it.
September is the months to spread the word and understand the struggles of others. In 1983 Sickle Cell was finally given its own month of awareness by the federal government.
Sickle Cell Disease, also known as SCD, is a disease of the red blood cells when they have an abnormal amount of hemoglobin. Hemoglobin is the protein in red blood cells that helps them carry oxygen through the body.
SCD is not contagious, but a hereditary disease that is only passed down if both parents have the abnormal hemoglobin gene and the child gets one of each. There are several types of SCD, but the most severe type occurs when a person inherits two S genes. Unfortunately, this is also the most common type.
Normal blood cells are in flexible disk shapes that can easily squeeze and travel through vessel walls. The problem with sickle cells is that the red blood cells are more of a crescent—or sickle—shape because of a stiff rod that forms in the blood cell.
The ability to squeeze through tight spaces in veins is taken away and the cells can get stuck to the sides of vessel walls clotting and possibly blocking the blood flow, making unaffected cells unable to transport oxygen to tissues.
Sickle Cell Diseses can cause severe pain with the lack of oxygen brought throughout the body. Sickle cells only last about 10 to 20 days while a normal red blood cell has a 90 to 100 day life cycle.
Sometimes the body has trouble keeping up with making enough blood cells for a person with SCD; this gives the person anemia, a red blood cell deficiency, causing them to have less energy. It can also be painful for them to move sometimes.
As of now the easiest ways to deal with SCD are small remedies like Hydroxyurea – an oral medicine to help relieve chronic pain, and red blood cell transfusions.
So far the only cure for Sickle Cell is Hematopoietic Stem Cell Transplantation, which is a bone marrow transplant.
This procedure is not easy, though, as the patient wishing to undergo the treatment must find a compatible match, often a sister or brother. Most people receiving this treatment are children as it is less risky for them than adults.
One adult success story Afia Donkor, age 33, had a successful transplant after her brother donated. She was able to run for two hours straight, a feat she never thought she would accomplish with sickle cell.
Only 1 out of 10 children with SCD were matched with a donor in their families – one of the reasons this cure is not well known is because of how low the rates of usage are.
Tests are being done to see if it is possible to transplant bone marrow in adults and children that don’t have a matching donor in their families.
Sickle Cell Disease is still a sickness swept under the rug but slowly emerging. The information is out there along with steadily growing research and building blocks to cures.
One day there may be alternative methods for curing sickle cell and it may even become a thing of the past.
Sept. is the month to support those struggling with the SCD and educate those around you about the difficult disease.
Sources “NHLBI Sickle Cell Resources.” – NHLBI, NIH. Department of Health and Human Services. Web. 11 Sept. 2015.