We move forward in our mission to raise awareness and education on the ravages of Sickle Cell. Our founder and mother of three children with the disease, has been invited to speak in New York at a conference sponsored by The Department of Health and Human Services Office of Public Health and Science Region II to speak at a conference titled “The Importance of Integrating Sickle Cell Disease and Thalassemia in Preconception Health”. This date coincides to commemorate the 100th Anniversary of Sickle Cell Disease on Friday, December 10, 2010. The meeting is being held at the Federal Building in Manhattan. The purpose of the meeting is to raise awareness of Genetic Diseases, particularly Sickle Cell Disease (SCD) and Thalassemia, for which public health issues remain real challenges for individuals and families. With the establishment of the Newborn Screening program many providers and policy makers have assumed that SCD and Thalassemia are no longer issues in the US. However, our large immigrant population and the lack of counseling provided to people with traits warrants a closer look at counseling and screening practices. The meeting will also serve as a forum to discuss the importance of integrating SCD and Thalassemia in preconception health in the delivery of family planning and primary care services. This invitational meeting will convene about 200 health providers and policy makers from the Region (New Jersey, New York, Puerto Rico and the US Virgin Islands). Vikki is dedicated in her mission to assist making changes in the way this disease is perceived by the public and raise awareness to move forward towards reasonable maintenance of symptoms or possibly an eventual cure. Her efforts have been rewarded for the first time by the fact that she can make a small contribution to this end. We applaud her and hope that her contribution at this forum will draw the attention of the health providers and policy makers whom we need on our side to promote furthering our mission to help every man, woman and child who suffers with sickle cell or carries the sickle cell trait.
“Your baby has a 25% chance of having Sickle Cell”
Those words meant little to me when I was six months pregnant for the first time. What I heard was…”Your child has a 75% chance of being healthy”. Today, I live with Sickle Cell Disease on a daily basis not with one, but all three of my children. They were born with Sickle Beta Thalassemia. I always knew growing up that I carried the thalassemia trait but learned that my children’s father carried a sickle trait when I was six months pregnant. I told them they were wrong. I was positive they had read the wrong blood test for him because he had blonde hair and blue eyes. I too thought at that time that only if you were of African-American descent did you have Sickle Cell Disease. Today I know that is not true. Doctors and society have placed a stigma on this disease and labeled it a “black” disease. I believe that due to this there is not the support or effort needed to find a cure. Sickle Cell Disease is a disease of the blood…. Not the color of your skin! This website is meant to serve two purposes. One, is to show the many faces of Sickle Cell Disease of those families that are affected by this disorder, and thereby, provide them with support. Two, is the hope to raise money to provide secondary education scholarships to those children affected by this disease.
There is currently no universal cure for sickle cell disease.
You ask, what does this all mean? My children and others living with Sickle Cell Disease suffer from pain crisis. Not just any pain, but pain so excruciating that at times Morphine is the only relief if at all by IV administered in the hospital. Some of the complications from the sickle cells blocking blood flow include:
- pain episodes
- increased infections
- leg ulcers
- bone damage
- yellow eyes or jaundice
- early gallstones
- lung blockage
- kidney damage and loss of body water in urine
- painful erections in men (priapism)
- blood blockage in the spleen or liver (sequestration)
- eye damage
- low red blood cell counts (anemia)
- delayed growth.
For further information, please read the Patient Information guide found at the Sickle Cell Information Center‘s website. – Vikki, Fort Myers, Florida
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What is Sickle Cell?
Will they grow out of it?
No, they will never grow out of it. It is a genetic disease that affects more people in the world than any other genetic disease. It is an inherited blood disorder that affects red blood cells. People with sickle cell disease have red blood cells that contain mostly hemoglobin S, an abnormal type of hemoglobin. Sometimes these red blood cells become sickle-shaped (crescent shaped) and have difficulty passing through small blood vessels. When sickle-shaped cells block these small blood vessels, less blood flow reaches that part of the body. Tissue that does not receive a normal blood flow eventually becomes damaged. It is this lack of blood flow through the small blood vessels, and the eventual tissue damage, that causes the multitude of complications associated with Sickle Cell Disease.