‘You Don’t Look Sick’: The Invisible Pain Of Sickle Cell Disease
We need to care.
Asked what’s her greatest need as someone with sickle cell disease, the answer coming from Candice Daler was a veritable call to action: “We need advocates,” she told me, adding, “We cannot be sick and advocate for ourselves. And because our pain cannot be seen with the naked eye, we are often ostracized as complainers. So we compensate by telling our friends and family that ‘we got this.’ But here’s the truth, when we say we do; we don’t.”
This is just one of the sobering conversations I have had with someone suffering from sickle cell disease (SCD) that fuels my intention to be a voice for this community. I have chosen to do so not just in my capacity as an elected official but also as a human being. During this month dedicated to sickle cell awareness, I am doing just that by shining light on this disease affecting millions of people around the world.Though in America the exact number of people living with SCD is unknown, it is estimated that 2.5 million Americans have the genetic trait for the disease, and about 1,000 children are born with sickle cell disease each year. Studies also show that 80 percent of the individuals affected by this disease are African Americans or persons of Caribbean descent. (An interesting fact of note is that it was in Chicago in 1910 that the elongated and sickle-shaped cell was first discovered in a patient –Walter Clement Noel — a 20-year-old dental student from Grenada.) Given that New York City houses the largest African American community of any city in America, with an estimated 1 in every 160 live births to this population being born with the sickle cell trait, the creation of medical strategies geared toward eradicating this disease cannot be overstated. That’s why I have sponsored a bill calling for the creation of a research foundation aimed at putting us one step closer to finding a cure.
This need comes alive in conversations with sufferers like Candice, 43 who was diagnosed with SCD at birth. A licensed social worker, Candice also heads her own non-profit organization dedicated to providing financial assistance for college-bound students with SCD. “In cases when we suffer what is called a pain crisis, it can become impossible to manage at home and so oftentimes we have to be hospitalized,” says Candice who has had numerous such crises. “These frequent hospitalizations cost a tremendous loss of school and productive work hours. Complicating the matter further is the fact that once you become an adult, our community loses funding making the resources for people like me very lacking.”