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For the first time this Friday, June 19, 2009, the United Nations will recognize Sickle Cell Disease World Day, and my cousin Shirley Miller will be on hand to share her personal and professional experiences with this life-changing disease.
Sickle Cell Anemia is among the world’s foremost, and at times most lethal, genetic diseases. In the United States, 2 million people are carriers of the sickle cell trait. Shirley, who is the advocacy manager for the hematology-oncology research service at Children’s Medical Center in Dallas, TX, is one of 70,000 people who are living with this blood disorder, a disease characterized by a shortened lifetime of anemia and a number of other side effects like infections, ulcers, vision loss, strokes and pain crises.
In the 1970s, the median survival of a person with sickle cell disease was 14. Today, the median is 42 for men, 48 for women. At 53 years old, Shirley is an inspiration to the more than 600 patients she works with at Children’s Medical Center, and everyone living with the disease.
In her speech to the UN, Shirley will share her hope that the first international recognition day will be “the beginning of a renewed and energized fight for increased access to care and services and eventually a cure for sickle cell disease.”
Listen to a live webcast of the UN’s Human Rights Council and Shirley’s speech this Friday at 10am EST.
Article adapted from Children’s Medical Center blog
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I am SO proud of my cousin Shirley Hall Miller!!!!