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The Third Annual Minnesota Sickle Cell Disease conference will be held on the 12th of September, 2009 at Normandale Community College, Bloomington, Minnesota. Sickle Cell Disease is one of the commonest inherited genetic diseases in the world, ahead of Down Syndrome and Cystic Fibrosis. Payment and reimbursements is still a huge limitation in sikcle cell healthcare in Minnesota. More than 600 Minnesotans are affected by the disease and more than 30 new cases have been diagnosed in the state since January 2009. This conference is organized annually by the Sickle Cell Disease Advocates of Minnesota, an advocacy and patient/family group based in the twin cities.
About The Third Annual Minnesota Sickle Cell Conference
The theme of this year’s conference is focused on healthcare finances and navigating the healthcare system to optimize sickle cell disease care. It is entitled: “PAYING FOR YOUR CARE, GETTING THE CARE YOU DESERVE”. Many patients and families have numerous difficulties obtaining optimal care for sickle cell disease because of the poor knowledge of insurance companies and the often beaurecracy-
We have brought together a group of experts in two broad areas with the goal of enlightening attendees on effective ways to access care for sickle cell disease and stress-free access to financial support for the care of persons affected by sickle cell disease. The sessions will include round-table discussions as well as question and answer sessions. At the end of this half-day meeting, participants will know what happens behind the scenes before, during and after clinic visits. How are the fees paid? What can we do to ensure the best communication and rapport with our providers? What other help and assistance is available to ensure that my child attainsfull potential in school?
Speakers at the conference include resource ersons from Minneapolis Urban League, PACER Center and Children’s Hospitals and Clinics of Minnesota. Registration is free. We have been raising funds for the conference through Facebook causes, “Sickle Cell Advocacy: Let’s Do This” on Facebook.
About Sickle Cell Disease
Sickle Cell Disease is a recessively inherited condition characterized by chronic severe bone pains, anemia, recurrent infections and complications of the major organs of the body. Common complications include splenic infarction, renal failure and stroke. Minnesota researchers are beginning to expose adverse effects of poor brain bloodflow of the disease on school performance. This condition is much more common in African Americans, native Americans, Hispanics and peoples of Mediterrenian ancestry. It is diagnosed at birth through newborn screening.
There is no known cure however researchers have successfully performed bone marrow transplant on a handful of children with very severe disease and most of them have done well and no longer experience symptoms. The standard of care however still remains regular physical and blood checks by a hematologist, ultrasound of the head from 3 years of life to look for early signs of strok potential, and hydroxyurea treatment to prevent symptoms. Other newer drugs developed in Nigeria have not been approved in the USA and are not available here.
Sickle Cell Disease can be prevented if individuals and the community as a whole take testing seriously. Testing for sickle cell disease carrier state before having children is one way of ensuring that more children are not born with this disease. The test is a simple inexpensive blood test that can be performed in most doctors’ offices.
