Ernest Alce didn’t find out that he had sickle cell disease (SCD) until he was in his 30s. “I always had a lot of pain, but I never knew why, and I never went to the doctor to find out,” he says.
SCD is an inherited condition, and despite having 14 siblings, Ernest never knew anyone else with the disease. “Most of us don’t know each other very well,” he explains. “I told the siblings I am close to about my sickle cell, and they all got tested, but no one else has it.”
“I’ve had a lot of medical issues and now I know they’re all related to sickle cell. So, if I’m having an episode, I know how to handle it.”
Now 50, Ernest says he lived with pain for years never realizing it was something that could be treated. Then, during a routine visit, his PCP noticed something while examining Ernest’s eye. “My doctor asked if I knew about sickle cell, and I told him I had never heard of it,” Ernest says. “He said I should get tested, and that’s how I found out I had sickle cell disease.”
That diagnosis changed everything for Ernest. He started seeing Dr. Elizabeth Klings and nurse practitioner Charlene Sylvestre at BMC’s Center of Excellence in Sickle Cell Disease. “I’ve had a lot of medical issues and now I know they’re all related to sickle cell. So, if I’m having an episode, I know how to handle it.” He also tries to manage his stress, because he has learned that stress can trigger an episode.
Ernest says living with SCD is still a challenge, but he’s trying to learn as much as he can about SCD and appreciates the support of his team at BMC. “Charlene is a very big help. She’s always trying to help me cope with any issues that come up.”
Two years ago, Charlene told him about a newer medication, called crizanlizumab, which is given by infusion once a month. “My health has been stable this past year,” he says. “The treatment has been very effective, and I haven't had any major chronic pain that requires an emergency room visit.”
Ernest works at TD Garden, and as a big sports fan, he’s looking forward to the upcoming Celtics and Bruins season. “My work is my enjoyment, and when I have time off work I try to keep active.”