Part of my job as a Life and epilepsy coach is networking.
Yesterday I was able to go to a great event and for a fantastic cause: Sickle Cell Disease and possible cure in the near future.
The event was in New York, which was hosted by the Children’s Hospital of Philadelphia. This is the children’s hospital that is the center of Sickle Cell treatment.
In attendance were a number of speakers and sufferers of this disease. The director of the Comprehensive Sickle Cell center is Dr Kim Shelley-Whitley, They are looking for funds and donations which they hope can treat this disease before it is allowed to develop in the early stages of pregnancy, see http://www.hopeonthehorizon.org .The hospital’s twitter is @ChildrensPhila .I spoke to a sufferer by the name of Dextor Darden , http://www.dextordarden.com/index/html , twitter is @DextorDarden who also works to educate and inform fellow sufferers and the public of this disease.
Sickle Cell disease is a group of disorders that affects hemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body. This distorts the red blood cells into a sickle, or crescent, shape.
This begins in early childhood and characteristic features include a low number of red cells(anemia), repeated infections and periodic episodes of pain. The signs and symptoms of sickle cell disease are caused by the sickling of red blood cells.When red blood cells sickle ,they break down prematurely, which can lead to anemia. Anemia can cause shortness of breath,fatigue, and delayed growth and development in children. The rapid breakdown of red blood cells may also cause yellowing of the eyes and skin, which can lead to jaundice. Painful episodes can occur when sickled red blood cells, which are stiff and inflexible, get stuck in small blood vessels. These episodes deprive tissues and organs-rich blood and can lead to organ damage, especially in the lungs,kidneys,spleen, and brain.
Sickle cell disease affects millions of people worldwide and is most common among people whose ancestors came from Africa, Mediterranean,Arabian peninsula and India as examples. It is the most common inherited disease in the United States.
The common aspect I learned was that despite being two different conditions (Sickle Cell and epilepsy), we all suffer from the same consequences of misinformation, ignorance and general issues with the general public throughout life.