September is national Sickle Cell Awareness month, but bringing awareness to the community and providing educational, social and economical support to children with sickle cell disease and their families, has been the daily mission of the Children’s Sickle Cell Foundation Inc. Now, celebrating its 10-year anniversary, the organization continues to reach its goals and make strides to assist in a better quality of life for children dealing with this painful disease.
“We are meeting our mission and have a strategy for each part,” said Andrea Williams, executive director of the CSCF. “We are teaching them (children with the disease and their families) how to live, but also how to live well. We want every person with sickle cell to be able to say that they are living well with sickle cell.” Like many, Williams is also a mother of a child with sickle cell.
Sickle cell is an inherited disorder that affects the red blood cells, causing them to change their shape. Normal blood cells have hemoglobin A and are soft, flexible and can pass through small blood vessels, but individuals with sickle cell have blood cells with hemoglobin S and the cells become a stiff, sticky sickle shape and have a difficulty passing through small blood vessels or even get stuck and clog blood flow, causing severe pain episodes or pain crisis, as they are also called, and complications to the organs.
According to the Center for Disease Control and Prevention it estimates that 90,000 to 100,000 Americans are affected by the disease and that it occurs among approximately one out of 500 births.
To reduce the number of pain crisis, which can lead to lengthy hospital visits, individuals are advised to drink plenty of water, avoid getting too hot or too cold, avoid places that expose them to high altitudes and low oxygen levels and ask their doctor about taking hydroxyurea, the one FDA approved drug to help reduce the number of severe pain episodes and reduce the need for blood transfusions.
Dr. Mark Gladwin, the director of the University of Pittsburgh Vascular Medicine Institute and chief of Pulmonary, Allergy and Critical Care Medicine at the University of Pittsburgh School of Medicine said there have been major strides over the past 10 years with the development of hydroxyurea and that it is very effective, but unfortunately it is not a cure and some patients do not respond well to it. He said it is still not enough to have one approved drug.
Williams agrees and said she believes a cure will be discovered.
Earlier this month, CSCF celebrated their 10th anniversary at Fun Fest Entertainment Center with approximately 200 guests. “It was amazing. Everyone showed up and I was very pleased,” said Williams.
CSCF offers a number of services of support, such as a family support program; one of the largest swim programs for children with sickle cell through a partnership with the Children’s Institute and Children’s Hospital of Pittsburgh of UPMC, in which it gives children the opportunity to swim in a heated pool because they cannot swim in cold tempered pools; and an educational support program, which works to assist and maintain continuity in one’s education when they are absent from school due to the illness, and offers assistance with educating teachers, faculty and staff about the disease and how to work with children they interact with regularly who have the disease.
Williams said on average students with sickle cell have 29 absences from school due to the illness and through CSCF’s programming they have decreased it to approximately 19 days and have increased the average GPA of students in their program.
Jessica Owens, a Verona mother of two children with sickle cell and a CSCF participant for four years, said, “They have helped with educating the faculty at my son’s school and Andrea has a wealth of information and someone is always available. I love the Children’s Sickle Cell Foundation.”
She said that besides the numerous services offered, the program has introduced her to other families going through the same thing. Owens said she would like to see a class that educates relatives who are unfamiliar about the disease.
But along with their programming, CSCF has launched an initiative to support research through a pilot program in which they are working with Gladwin to get more researchers and will be introducing their “Living Well with Sickle Cell” campaign.
Both Williams and Gladwin agree that while there have been many strides made in dealing with sickle cell, there needs to be more, especially in regards to government funding for research.
“Andrea is a passionate, committed mother and energetic leader and advocate,” Gladwin said. “She has made a difference locally, but nationally as well by capturing the attention of the government. Funding for sickle cell research is low right now and she is pushing for more. We need more people to join her efforts.”
“We need more funding for care and research. We need a permanent line item on the budget, so that no matter what money is always available,” Williams said. She said there is currently only a temporary line on the state’s budget and that there has not been an increase in funding since 2007.
As for the future of CSCF, Williams said, “The future is bright because we are a foundation built for families, by families. I believe we are going to do more for families, the community and research.” She adds that her goal is that by the next ten year anniversary there will be a sickle cell foundation in every major city.
(For more information on the services provided by the Children’s Sickle Cell Foundation, visit www.cscfkids.org)