Living with a chronic condition such as sickle cell disease requires daily attention and commitment. How you manage your condition today can impact your health in the future.

“Many people with sickle cell disease lead full, active lives,” says Foluso Ogunsile, MD, hematologist and medical director of the Sickle Cell Disease program at Memorial Healthcare System.

Here are six important things you should know to help you live well with sickle cell disease:

1. Sickle Cell Pain Crises Need Quick Treatment

Pain crises happen when sickle-shaped blood cells lodge in small blood vessels. This blockage slows blood flow and damages tissues, causing pain and inflammation. The pain can feel sharp, dull, throbbing or burning and can occur anywhere in your body.

“When a pain crisis starts, treating it right away can help control pain and reduce tissue damage,” says Dr. Ogunsile. Treatments you can try at home include:

• Avoiding triggers that could make the pain crisis worse
• Drinking plenty of fluids
• Taking your prescribed pain medicine as directed
• Using warm compresses

If the pain doesn't improve, you may need to call your doctor or go to the emergency department. Many people with sickle cell disease find emergency care challenging. Some healthcare providers may not understand sickle cell pain or the need for strong pain medications.

Talk to your doctor ahead of time about a pain plan. They can help you choose a hospital that has experience caring for people with sickle cell disease.

Wearing your medical ID tag can also help ensure you quickly receive the right emergency care during a pain crisis.

2. Staying Hydrated Helps Prevent Pain Crises

Hydration plays a vital role in pain crisis prevention and treatment. When you’re dehydrated, your blood becomes thicker. Red blood cells are more likely to clump together and cause pain.

You can become dehydrated if you don’t drink enough fluids. Other causes include:

• Caffeine, alcohol and too much salt
• Diarrhea or vomiting
• Fever
• Frequent urination
• Heavy sweating

“To stay hydrated, aim for 8 to 10 glasses of water each day,” says Dr. Ogunsile. Foods with a high water content can also help. Some hydrating options include cucumbers, lettuce,
tomatoes, watermelon and strawberries.

3. Infections Can Be More Dangerous

Sickle cell disease damages the spleen, an organ that helps filter bacteria from your blood. Without a working spleen, bacterial infections can become serious very quickly. Some viral infections can also be dangerous.

To lower your risk:

• Seek emergency care for a fever of 101 degrees F or higher.
• Stay up to date with vaccines. Ask your doctor which vaccines are needed for adults
  with sickle cell disease.
• Wash your hands often.

4. Your Mental Health Matters

Chronic pain, stress and stigma due to sickle cell disease can affect mental well-being.

“Many people experience depression, anxiety and trouble sleeping,” says Dr. Ogunsile. “Social isolation is also common.”

If you’re struggling emotionally, let your doctor know. They can connect you with a therapist or support group. Online resources are also available, including tools from the Sickle Cell Disease
Association of America.

5. Planning Ahead Improves Pregnancy Outcomes

When it comes to pregnancy and sickle cell disease, several factors are important to consider:

• Some sickle cell treatments, such as hydroxyurea, shouldn’t be taken while pregnant or breastfeeding and may affect fertility. Your doctor can adjust your medications or refer you to a fertility specialist.
• Sickle cell disease is inherited. Genetic counseling can help you and your partner understand the chances of passing it on. Pregnancy is considered high-risk for women with sickle cell disease. You may need care from a specialist who treats high-risk pregnancies.
• Using birth control while planning can help you prepare for pregnancy when the time is right.

6. Regular Medical Care Can Prevent Problems

Managing sickle cell disease can be complex. Regular checkups help make sure treatments are working and allow doctors to catch problems early.

“We typically see patients every one to four months,” says Dr. Ogunsile.

Routine care focuses on preventing pain crises through medications, healthy habits and avoiding triggers. If a crisis does occur, having a trusted care team can help you get fast and effective pain relief.

Memorial's Sickle Cell Disease department offers comprehensive care, including hematology, infusion services, and pharmacy support, all in one place.