“I have sickle cell — but sickle cell doesn’t have me.”
For most of his life, 35-year-old Dashawn Dowdy has lived with sickle cell disease (SCD) - a genetic condition that affects the red blood cells. SCD causes severe, chronic pain and can lead to frequent hospitalizations. Diagnosed at age 2, Dashawn has spent decades learning how to manage the disease on his own terms. "I really don't like to disclose to people that I have sickle cell, because five or 10 minutes after I tell them, they're asking me how I'm feeling," he says. "I know it's not a trick question, but I don't know how to answer because I'm always in pain. People don't realize how painful it is. If I'm having a pain
crisis, the only thing you can do to help is call 9-1-1.”
A lifetime of care for SCD
Since he was first diagnosed, Dashawn has been cared for at the Center of Excellence for Sickle Cell
Disease at BMC — first by Dr. Amy Sabota, and now as an adult, by Dr. Lillian McMahon and Charlene
Sylvestre. "With Dr. McMahon, I sit there and talk to her about life and my son. It's just a genuinely
good relationship.”
To manage his pain, Dashawn takes folic acid and pain medications, and he says that regular exercise
like walking, yoga, stretching, and light weightlifting helps. "But not too much, because it puts a strain
on the body," he explains. He also makes sure not to be on his feet or in the heat for too long. Once a
month, he goes into BMC to get a red blood cell exchange, which relieves his pain for about a week.
Although his care team has encouraged him to consider one of the two sickle cell gene therapies
available at BMC, he has told them he is not interested at this time. "Sometimes I'm a little difficult
with my doctors," Dashawn admits. "But Dr. McMahon understands me. She doesn't try to give me
pushback. She just listens, and we go from there. Even if she does push back gently, she will explain
why. I know she’s trying to help.”
A sickle cell warrior — and now advocate
Although Dashawn's parents both have the sickle cell trait, no one else in his family has the disease, so he found himself educating people from an early age. As he got older, he shared his knowledge with friends and coworkers, and recently, he has turned his expertise into advocacy. He now attends awareness events, speaks out about his experience, and finds purpose in helping others better understand the realities of sickle cell.
Last year, Devin and Jason McCourty visited Dashawn at BMC during a red blood cell exchange. Afterwards, he was later invited to present an award to them at the BMC Seasons gala event. “The fact that they came to see me speaks volumes,” says Dashawn. “I would always say to my grandmother, ‘Why is it that they never highlight sickle cell like they do cancer?’ It always bothered me, so now I'm trying to raise awareness about sickle cell disease.”
Despite his challenges, Dashawn is clear about one thing: "I have sickle cell, but sickle cell doesn't have me. Just because you have some type of disease, it's not supposed to stop you from doing anything you want to do in life. I might be different than other people, and it might take me a little longer to do things, but it's not going to stop me from doing whatever I want to do."
Dashawn says his determination to keep moving forward comes from his son, now 9 years old. "He's my motivation. I just want to wake up every day and be able to do what I need to do - for me and for my son. I live life one day at a time."