BlackDoctor.org: What are other tips for managing sickle cell disease to help make it easier?
Devin: The most important thing is working with your doctor to make sure you are on a treatment plan that works for you and your individual needs. Learn as much as you can about sickle cell – the more informed you are, the more you can advocate for yourself and your health. The sickle cell community is really amazing. There are great groups all over the country that are working to build awareness, raise funding for research and care, and spread the word about sickle cell disease. It’s a tight-knit community, and we have felt very fortunate to get to know so many members of that community over the years through Tackle Sickle Cell. Being a part of these communities, whether it’s in person or online, can really make a difference in terms of sharing information, and providing support and inspiration.
BlackDoctor.org: Can children with sickle cell disease play sports? If so, what can they do to be safe?
Jason: Absolutely. Each patient with sickle cell is different, so it’s really important to partner with your doctor and healthcare team. If you’re a parent of a child with sickle cell, have a discussion about which activities are safe for your child to participate in, and what measures you can take to make sure they are safe. Their health is always the top priority! We’ve met tons of kids and adults with sickle cell who are active, play sports and have lots of cool hobbies and interests.
Sickle cell is a part of who they are, but it doesn’t define them, or keep them from doing what they love.
BlackDoctor.org: What advice would you offer a teenager living with sickle cell disease?
Devin: For patients with sickle cell disease, the transition from pediatric to adult care is a critical time. Children and young adults with sickle cell disease receive exceptional care from their pediatric hematologists, but being more responsible and being your own advocate can be challenging. Being proactive, being knowledgeable and doing some research about how you and your HCP can to best manage treatment will help ensure you don’t miss a beat during this transition.
BlackDoctor.org: If you have a loved one with SCD, what are ways to be supportive?
Devin: Always be willing to lend an ear, and listen to them when they are sick, upset or frustrated. When you don’t have sickle cell yourself, it can be hard to truly understand what that person is going through. The more you listen, the more you’ll learn, and you can better understand how you can help them.
Jason: Many of the patients we talk to have said they often feel frustrated because they are told by others that they “don’t look sick.” It’s really sad to think that people living with chronic illnesses like sickle cell would be dismissed like that. Make sure that your loved ones with sickle cell know that you support them unconditionally, and will always be there to listen to them, and help them in any way you can.
Jason and Devin McCourty are twin professional football players and founders of Tackle Sickle Cell, a campaign that aims to educate the public, increase blood donations, and raise money and awareness for the fight against sickle cell disease. Tackle Sickle Cell is supported by Novartis Pharmaceuticals.
References
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