PORTLAND, Ore. – With hundreds of Oregonians suffering each day with the devastating impacts that sickle cell anemia can have on their lives, the Sickle Cell Anemia Foundation of Oregon will host an educational workshop about the disease on Aug. 23 at Grace Community Fellowship.
“It’s through a lack of awareness that we lose more than 250 American infants a year to sickle cell disease,” said Marcia Taylor, Executive Director of the Sickle Cell Anemia Foundation of Oregon. “Biomedical research and study populations must better reflect the country’s changing demographics so that we have adequate representation of our diverse populations.”
WHO: Patients, their families, social workers, doctors, and other members of the community are encouraged to attend.
WHAT: Educational workshop on diagnosis of sickle cell disease and the importance of racial and ethnic diversity in clinical trials
WHERE: Grace Covenant Fellowship, 5450 NE Flanders St, Portland
WHEN: Aug 23, 2016 – 6 pm to 7:30 pm
Sickle cell anemia is a genetic disorder, an inherited hereditary from of anemia. Amemia is a condition where there are not enough healthy red blood cells to carry oxygen throughout the body. Sickle cell anemia occurs in individuals who are born with two “sickle cell” genes, each gene inherited from one parent. An individual with only one sickle cell gene has “sickle cell trait,” which occurs in one out of every 12 African Americans and in one out of every 100 Latinos in the United States. Sickle cell disease also occurs in other ethnic groups, including people who are of Mediterranean and Middle Eastern descent.
According to the Centers for Disease Control and Prevention, it is estimated that:
• Sickle cell disease (SCD) affects approximately 100,000 Americans.
• SCD occurs among about 1 out of every 365 Black or African-American births.
• SCD occurs among about 1 out of every 16,300 Hispanic-American births.
• About 1 in 13 Black or African-American babies is born with sickle cell trait (SCT).
“Too many people here in Oregon are suffering in silence, enduring pain and illness and with little hope of new treatments that can reduce their suffering,” said Jarvez Hall who saw his mother and uncle lose their battle with the disease and is himself a carrier of the Sickle Cell Trait. “We hope that we can better educate people here
locally to help improve early diagnosis and the quality of life for sickle cell sufferers.”
Sickle cell disease is a condition that results in a range of health problems, including serious pain, fatigue, organ damage and even early death. According to the CDC, approximately 1% of children with SDC will die within the first 3 years of life — often from stroke and without warning. Some two million Americans are carriers of the sickle cell gene, and many are not aware that they carry the gene.
The Sickle Cell Anemia Foundation of Oregon works to expand outreach, education and testing among impacted communities. “Participation in Clinical Research Trials is crucial to the development of new treatments for sickle cell disease, and it is critical that trail participants accurately reflect the diversity of the patients living with Sickle cell disease,” said Taylor.
People interested in more information on the event can call the Sickle Cell Anemia Foundation of Oregon at 503-249-1366.
The Sickle Cell Anemia Foundation of Oregon promotes awareness of the genetic causes and health effects of sickle cell anemia and related conditions. It is dedicated to educating vulnerable populations and to encourage testing for the presence of this painful and life-threatening, but treatable disease. Find out more at www.sicklecellanemiaportland.org/
