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Gary Barg - Editor-in-chiefLessons From a Mom

Founded by the World Federation of Hemophilia in 1989 and held annually on April 17, World Hemophilia Day is dedicated to raising awareness of hemophilia and other inherited bleeding disorders. Between that and the new release of our book, Caregiving Ties that Bind, which relates the lessons we have learned from our 108 cover interviews with caregivers with famous faces, it occurred to me that one of my favorite celebrity interviews was not with a movie star, politician or singer, but someone who is proudly A Mom.

Jeanne White’s son Ryan is best remembered for the battles he faced as a teenager living with AIDS in the early days of that disease where fear and misunderstanding were rampant.  Ryan’s legacy of strength and commitment was outstanding for anyone facing the obstacles he faced; but more impressive yet, considering he was a teenager. Ryan contracted the disease through an infusion of Factor 8, an early hemophilia treatment. Although the treatment made him feel better, he tragically received a tainted dose before appropriate blood testing was available.  Ryan passed away in 1990 at the age of 18, but his mission lives on through Jeanne. She attends Hemophilia Walks and is an advocate for everyone living with the disease. Hemophilia is a bleeding disorder in which the blood doesn't clot normally; it is usually inherited. People born with hemophilia have little or no clotting factor, which is needed for normal blood clotting.  In general, symptoms are internal or external bleeding episodes or "bleeds."

We recently ran an interview with Kimberly Haugstad, the Executive Director of the Hemophilia Federation of America.  The responses we have received from caregivers whose loved ones are living with hemophilia remind me so very much of my conversation with Jeanne many years ago.  It seems that the ties that bind, no matter what the illness or disease your loved one faces, remain the same—love of family.


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