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Governor Gregoire declares April 3, 2007 - Sickle Cell Awareness Day

April 03, 2007

 The OBCC met with government officials, patients and families, and sickle cell disease (SCD) advocates today to announce legislation from the Washington State House and Senate that aim to change the way patients are diagnosed and treated for SCD.

The OBCC met with government officials, patients and families, and sickle cell disease (SCD) advocates today to announce legislation from the Washington State House and Senate that aim to change the way patients are diagnosed and treated for SCD.

Legislators in both the Washington State House and Senate passed two resolutions (HR-4654 and SR-8679) this morning recognizing the work of the Metropolitan Seattle Sickle Cell Anemia Task Force for its important contribution educating the people of Washington on the serious health problem of Sickle Cell Disease. Patients, advocates and caregivers attended the announcement of the resolution and participated in a luncheon panel, which included Bobby Engram (#84, wide receiver) of the Seattle Seahawks whose daughter is affected by SCD and Dr. M. Bender, director of the Odessa Brown Comprehensive Sickle Cell Clinic and associate professor at the University of Washington School of Medicine.

The OBCC, in conjunction with patients and caregivers, the Northwest Sickle Cell Collaborative, the Metropolitan Seattle Sickle Cell Task Force and Novartis Pharmaceuticals, worked with legislators and Governor Gregoire to emphasize the need for increased attention and funding for SCD and the thousands of people affected by this life-threatening disease.

Sickle cell anemia is a rare, genetic disorder impacting more than 72,000 Americans, including one out of every 500 children born in the African-American community. SCD patients have irregular, “sickle-shaped” red blood cells which are very stiff and can clog blood vessels, depriving the body’s cells and tissues of blood and oxygen. Symptoms may include anemia, recurrent bacterial infections, clots in the lung, brain and spleen, and periodic pain. Thirty years ago, 25 percent of sickle cell patients died before age 6. Thanks to dramatic improvements in managing the disease, most children with SCD today can expect to live into their 60s. While there is no cure for sickle cell anemia, aggressive screening and innovative therapies allow children born with the disease to lead full, productive lives as young people and adults.

“While SCD can be life-threatening, there are many treatment advances that help patients manage the disease and associated complications. In addition, with a bone marrow transplant, there now is a cure for Sickle Cell Disease,” said Dr. Bender. “Regular checkups for children with SCD are important to help prevent infections, pain, strokes, and breathing and heart problems before they start. What is critical is that people that are at risk find out if they are carriers and determine if they could have a child with sickle cell disease.”

“We have worked hard to develop a supportive community and treatment center for patients with SCD, but we also realize the need for change in how patients are diagnosed, treated and cared for in the state of Washington,” said Crystal Lyons, supervisor of community programs at OBCC. “While today marks an important day for Washingtonians affected by SCD, we need to keep this momentum going throughout the year to continue to create awareness and improve treatment for these patients.”

The OBCC Sickle Cell Anemia Clinic treats 75 to 80 percent of the Northwest’s sickle cell patients providing care to patients throughout Washington, Alaska, Montana and Idaho. The team includes health care providers from medicine, nursing, social work, genetic counseling, neuropsychology and community outreach to address all aspects of the patient’s health. Services include preventive care, treatment, education, genetic counseling and community support.

“We are pleased that so many supporters could help us raise awareness today, not only of the disease, but of the importance of working together to provide early diagnosis and access to treatment for those most likely affected by SCD,” said Ken West, President Metropolitan Seattle Sickle Cell Task Force. “Patients with SCD are affected everyday by the disease and its associated complications. The more we can do as a community to offer support and provide necessary and consistent care, the better off SCD patients will be.”

The speakers of the panel discussed the importance of creating a supportive environment for patients with SCD, and educating the public about this genetic disease. Additionally, speakers highlighted some of the complications associated with the disease including iron overload from blood transfusion treatments.

For more information about sickle cell disease, visit Children's Sickle Cell Program or www.nwsicklecell.org.

About Seattle Children’s

Consistently ranked as one of the best children’s hospitals in the country by U.S. News & World Report, Seattle Children’s serves as the pediatric and adolescent academic medical referral center for the largest landmass of any children’s hospital in the country (Washington, Alaska, Montana and Idaho). For more than 100 years, Seattle Children’s has been delivering superior patient care while advancing new treatments through pediatric research. Seattle Children’s serves as the primary teaching, clinical and research site for the Department of Pediatrics at the University of Washington School of Medicine. The hospital works in partnership with Seattle Children’s Research Institute and Seattle Children’s Hospital Foundation. For more information, visit www.seattlechildrens.org or follow us on Twitter or Facebook.

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