How to Manage

How to Manage

Living Well with Sickle Cell

Building a foundation of healthy habits can help you live your life! People with Sickle Cell can have full lives and enjoy a vast range of activities. It is important to arm yourself with knowledge, build a healthy and supportive community, and take certain precautions. Doing so can help position you to not only survive, but to thrive with Sickle Cell!

Two young women standing on the beach smiling and embracing

Living well with Sickle Cell disease

  1. Find good medical care:
    Sickle Cell is a complex condition that is frequently misunderstood. Good quality medical care from doctors and nurses who are familiar with the condition can prevent some serious problems. It is a good idea to include a hematologist (a blood specialist) in your care plan. You can find a specialist. And make sure that you see your doctor regularly, even just for routine checkups.Find A Specialist
  2. Prevent infections:
    Common illnesses like the flu can be dangerous for a person with Sickle Cell. Make sure you are fully vaccinated, including pneumococcal (pneumonia) vaccine and a yearly flu shot. Practice daily good hygiene with hand washing and food safety.
  3. Develop healthy habits:
    Hydration and nutrition are very important for people with Sickle Cell. Guidelines suggest that staying well-hydrated may help prevent a pain crisis, so make sure to drink at least 8-10 glasses of water a day. Eat a well-balanced diet with plenty of calcium-rich foods like low-fat milk, yogurt, and cheese, leafy green vegetables, and calcium-fortified foods like soymilk, orange juice, and tofu. It can help to add nutrient-rich high-calorie foods like dried fruit, nuts, and smoothies into your diet as well.
  4. Maintain a balanced body temperature:
    Maintain a balanced body temperature: it’s important that people with Sickle Cell don’t get too hot or too cold. Physical exercise should be part of your weekly regimen, but make sure to not overdo it. Overdoing it will mean something different for everyone. Listen to Dalilah and Mekhi talk about how they pay attention to their bodies.
  5. Get support:
    Your family and friends can help you monitor your health and be there to listen to you. Even if you’re the only one in your family with Sickle Cell, like Dalilah, your family can still help. You may want to find a patient support group or community-based organization that can provide information, assistance, and support, like this list of groups. Just having people who understand your experience can be extremely helpful because it can make your pain feel less isolating. And, it can provide a network of people to learn from and grow.
  6. Talk with your doctor about ongoing clinical studies that might be right for you:
    Staying knowledgeable about Sickle Cell will empower you to evolve your own self-care. New clinical research studies occur frequently and these might give you new investigational treatment options. There are systems that, with a patient’s permission, allow doctors and nurses from different organizations to digitally share their medical information in just a few seconds. Ask your doctor or hospital if they use electronic health records and are part of a system like this. It can help keep them informed about your medical care.