'You Don't Look Sick': The Invisible Pain Of Sickle Cell Disease
We need to care.
October 12, 2018 at 2:41 pm
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.”
However, even though there are more resources for underaged sufferers, the need for support – and ultimately a cure – is underscored with experiences like Malkia Godbolt and her 1-year-old granddaughter affectionately called Baby Royale. The family learned of Baby Royale’s diagnosis in December 2016 when she turned three months. They received a letter from the hospital informing them about the positive result of the test which was taken at birth (which is a standard procedure in all 50 States since 2016). But the real complication in this matter is the misdiagnosis of Baby Royale’s mother, 21-year-old Symphoni Flowers. Doctors failed to detect the SCD trait in Symphoni though she was acutely ill for most of her life. “The thing is that my daughter was always sick,” says Godbolt. “I was constantly running in an out of hospitals with her. As a result, she missed so many classes that she struggled to get out of high school. A simple cold turned into a two-week hospital stay and severe pain. They tested for everything including SCD but each time said there was nothing wrong other than numerous allergies.” Now with the onset of Baby Royale’s diagnosis, it has been discovered that she has the SCD trait. With their growing distrust in the medical establishment, Malika and Symphoni are refusing to use the pharmaceutical drugs being prescribed for Baby Royale, opting instead to go the alternative medicine route. For this, doctors have called in social workers with a threat of reporting the mother and grandmother to ACS. They have won the preliminary round of investigation but live with the ever increasing anxiety looming over their heads for their choices.
Like Candice, they too need an advocate. Different reason, same pain. According to Candice, something she hears way too often is: ‘you don’t look sick.’ This even while she is in debilitating pain – and unseen damage being done to her internal organs. So yes, by large many people are unaware of the pain and complications that occur with SCD. But now, not only am I supporting this cause with legislation — I have articulated the stories of people at both ends of the spectrum. So now you know!