Wanda Whitten-Shurney carries on the mission started by her father, Charles Whitten. His calling was to help young men and women get tested for the genotype carrying sickle cell so they can choose to bear children and accept the risks involved.
Today, the disease plagues 100,000 Americans, who are mostly of African-American or Hispanic descent. It causes lifelong anemia, severe pain and shortened lifespan and is inherited and caused by a mutated gene that triggers the production of abnormal hemoglobin in red blood cells. About 1,000 babies are born with the disease each year in America.
“This is a chronic, lifelong disease for most patients – but it doesn’t get the resources to support patient services that it rightly deserves,” says Whitten-Shurney, a Children’s Hospital of Michigan pediatrician and medical director of the Michigan chapter of the Sickle Cell Disease Association of America.
“These (sickle cell) patients frequently endure great pain. They also suffer from anemia and sometimes a life-altering stroke. And many don’t live beyond their forties or fifties, because their life spans are often shortened by the disease,” she says.
This month 750 health care activists, parents and friends walked around Detroit’s Museum of African American History and into the community surrounding the museum to bring awareness to the disease. The walk benefitted Sickle Cell Disease Association of America Michigan Chapter.
“Our goal in hosting the High Five Awareness Walk is to try and put sickle cell disease on the healthcare map,” says Whitten-Shurney, a leading warrior in the fight to cure or better cope with this disease.
Today, awareness of sickle cell is far less than cancer, hypertension and diabetes.
“When a child is in pain from sickle cell anemia, the whole family is in pain. Parents are distraught because they can’t do anything about it,” says Whitten-Shurney, who was recently awarded a seat on National Sickle Cell Disease Advisory Committee. She will now have an expanded national role in shaping federal policy and guidelines aimed at lessening the impact of the genetically triggered blood disorder..
Parents can lean on a myriad of support systems. Her organization provides an after-school program in Detroit where adults and older teens, who have sickle cell, help younger kids with the disease to do their homework as well as mentor them. Together they share meals and stories of challenge and triumph.
Children’s Hospital of Michigan is a national leader in sickle cell research, through the work of Steven E. Lipshultz, MD, the pediatrician-in-chief of Children’s Hospital of Michigan and Ahmad Charaf Eddine, MD, a Children’s Hospital cardiologist. Together they are studying the cardiovascular effects of the main drug used to treat sickle cell, hydroxyurea.
The National Heart, Lung and Blood Institute of the National Institute of Health selected Children’s Hospital as the nation’s central cardiology core laboratory for its study on babies and sickle cell. They have learned that abnormalities in the heart and blood vessel structure and function are related to the severity of sickle cell.
“Our promise is to continue delivering comprehensive services, with true compassion,” reads the mission statement on the Sickle Cell Disease Association. The Michigan chapter has an office building in northwest Detroit serving those with a condition, which causes lifelong anemia, severe pain and shortened lifespan.
Financial support comes from the state of Michigan Department of Health and Human Services, Federal Health Resource and Service Administration, and particularly the Cynthia Coles Circle of Friendship Baptist Church.
What matters most to Whitten-Shurney is loving and encouraging those afflicted with sickle cell anemia to enjoy a higher quality of life.
“With enough funding and support we can wipe this disease off the face of the earth,” she says.