Her story: Anissa Sacchino, a 49-year-old from Temple Hills, Maryland, learned early that most childhood activities — like playing in the snow or jumping into swimming pools — had to be modified for someone living with sickle cell disease. These activities would send her body into excruciating pain. “As a child, I was hospitalized multiple times a year,” she said. Now, Anissa, a wife and caregiver, has less-frequent hospitalizations but her pain crises still occur about twice a year.
Listening to her body: “Slowing down allows you to hear your body,” she said. Being mindful of changes in weather and the environment, Anissa aims to avoid catching colds and infections, which will have a more negative impact on her body than for others. “Not having health insurance for a few years, I became a germaphobe,” she jokingly shared. “I changed the way I was eating,” she added. “I just try really hard to make sure that I am taking care of myself.”
Participating in research: In 2011, Anissa participated in a clinical research trial for hydroxyurea at the NIH. The treatment took six to seven months for her to notice an effect, but it has made a significant difference. “It didn’t necessarily stop me from having crises, but they changed,” she explained. “It wasn’t the same type of debilitating thing.”
Hope for the future: Anissa has lost close family members — her father, sister, and cousin — to sickle cell disease. “It was a built-in community for us,” she said about their bond. She hopes that increased awareness and support for sickle cell disease will ultimately lead to a cure.
Advice for others: “As a blood disease, sickle cell disease affects the entire body,” said Anissa. “It’s more than just pain.” This is why she encourages others to find medical professionals familiar with the condition. “It’s okay to ask questions, like ‘How many patients have you worked with who have sickle cell disease?’” she shared. “It matters to have someone who understands where you are and what you need.”