Foundation active in the community
The Portland metro area’s Sickle Cell Anemia Foundation serves the State of Oregon and parts of southwest Washington with information and education.
Volunteers who work with the Oregon Chapter of Sickle Cell Disease Association of America say as far as they know there are no other Sickle Cell foundations in the region. The group has been active since 1986 providing the following services: Counseling, parent and client education, care provider, and community education, limited financial support to those meeting the foundation criteria, moral support, advocacy between agencies and support group meetings.
In the past, the foundation provided free diagnostic testing, but because of the economic downturn needs donations to continue to offer this service. The foundation also seeks funding for administrative overhead to provide full-time office support.
Sickle Cell Disease is a debilitating disease and is still very much present affecting people in the community and resulting in early death.
Although there is no known cure, there is treatment. Many lives have been improved through hydroxyurea and a few have reported success with bone marrow transplants.
Hydroxyurea is a chemotherapy agent with potent effects on the bone marrow. The agent was used for many years to treat people with certain malignancies before being used for sickle cell disease. The primary side-effect of hydroxyurea is suppression of blood counts, particularly the white blood cells (neutropenia) and platelets (thrombocytopenia). Neutropenia and thrombocytopenia, respectively, place patients at risk for infection and bleeding. Patients with sickle cell disease who require hydroxyurea therapy are best served by having their treatment coordinated by specialists familiar with the use of the drug.
There are some promising treatments and new medical procedures that give hope. Patients are encouraged to talk with their physicians about their own personal condition and treatment plans.
The local Sickle Cell Anemia Foundation is on the frontline fighting the fight and will keep the community informed on what’s going on in this area.
In the meantime, the group is recruiting new board members and community workers to share their professional skills, ideas, and commitment to the foundation (no sickle cell related knowledge is necessary) to help keep a commitment to people suffering this dreadful, painful and life-threatening inherited blood disorder.
Potential board members should send their resumes to loelegance@aol.com or fax them to 503-252-9730 to the attention of Pastor Marcia Taylor. The group’s web is sicklecellanemiaportland.com for those who wish to learn more about Sickle Cell Anemia.
