Baltimore Community Fellowships
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© Open Society Institute
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Baltimore, Maryland
2009
As an adult living with sickle cell disease, Efa Ahmed-Williams attended a helpful support group, and one day, a young man who had not finished high school because of the chronic illness came to the group.
"He had been sick a lot and had been put out of school because of attendance problems," Ahmed-Williams says. "I thought there should be something to help him navigate the school system, the health care system and life."
So Ahmed-Williams started Destined to Live—now called Destiny Despite Sickle Cell Disease—a support, advocacy and direct service group for young people suffering from the inherited blood disorder that causes tissue and organ damage, anemia, pain and sickness.
Children and young adults with sickle cell have issues not shared by healthy adults. Many young people, accustomed to having parents speaking for them, need help learning to articulate their concerns to doctors and health workers. Others need to be encouraged to reveal their sickness to friends—such as college roommates—so they can act as advocates. In addition, extended illnesses can disrupt coursework. Ahmed-Williams remembers that as a sophomore at Morgan State University, she got pneumonia her first semester and had to take an "incomplete" in all her classes.
In Ahmed-Williams' program, which meets twice a month at Johns Hopkins University Hospital, young people ages 13-18 tackle all those issues and more. Through presentations, guest speakers, field trips, activities and group discussions, the young people learn to successfully transition from being adolescent patients to responsible adult patients. They learn life and coping skills to help them manage their chronic illness and their life.
Ahmed-Williams has a special interest in helping youth with sickle cell grow into responsible adults. When she was diagnosed at age two, doctors told her parents that it would be a miracle if she lived to age seven. "When I hit seven, they said, oh it would be to age 11. At the time, medical journals said 19 was the average age lived," says Ahmed-Williams, now 37. "I'm proof that you can make it to adulthood and be successful."
Over the years, Ahmed-Williams, who is now married with a four-year-old daughter, learned to advocate for herself. She once chastised a prominent doctor who seemed unable to give her the attention she needed because there was inadequate medical research. That doctor eventually helped create The Johns Hopkins Sickle Cell Center for Adults, the only one of its kind in Maryland.
"I want the young people to realize that you're a partner with the physician in your health care," Ahmed-Williams says. "And when you are more educated, then you will be healthier. When you know how to take care of yourself and advocate for yourself, then you will be healthier."
