Living with Hemophilia

Hemophilia is an inherited bleeding disorder caused by a deficiency or defect of one of the proteins necessary for blood to clot properly. Hemophilia occurs in 1 in every 5,000 male births for Hemophilia A and 1 in every 20,000 births for Hemophilia B. von Willebrand Disease (VWD) is an inherited deficiency or defect of a blood clotting substance called von Willebrand factor.  VWD occurs equally in men and women and affects as much as 2% of the population.

Joining us today were Marita Postma, Executive Director of The Hemophilia Foundation of Oregon Madonna McGuire Smith, Development/Events Director of HFO and mother of 3 children with von Willebrand Disease, Madonna's daughter Erin Smith, who has VWD and Jeff Johnson who lies with Hemophilia.

The Hemophilia Foundation of Oregon (HFO) is a volunteer health organization dedicated to the prevention, treatment and cure of bleeding disorders. Nationally, there are approximately 20,000 individuals living with hemophilia; 400 families in HFO’s service area live with bleeding disorders. Including family, friends and caregivers, thousands of people are touched by bleeding disorders.

For over three decades the Foundation has provided programs and services which promote and support knowledge, health and advocacy for all people whose lives are affected by bleeding disorders. HFO’s programs and services are designed to complement the medical care provided by the physicians at the Hemophilia Center at OHSU and other hematologists.

Race and Walk information:
Saturday, June 28, 2014 at the Howard M. Terpenning Recreation Complex, 15707 SW Walker Rd., Beaverton, OR 97006. Register here.
 

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