Living with Sickle Cell Disease

With improving treatments, people with sickle cell disease (SCD) generally have full lives and can enjoy most activities. Taking steps to control your own healthcare and adopt healthy habits can help achieve this.

Your mental and emotional health are especially important. SCD can put a large burden on you. This stress can trigger or worsen pain. Finding support from your family, community, or other people can help maintain your emotional and physical well-being.

Making a pain management plan

Pain is a frequent problem for people with SCD. A pain management plan allows you and your doctors to treat pain in a controlled way. This can help you get the best treatment as fast as possible. A pain management plan should include:1,2

  1. How to prevent pain and what triggers to avoid
  2. How to treat mild pain at home using NSAIDs, hydration, and other techniques
  3. How to use pain management skills like guided imagery, deep breathing, and relaxation
  4. When to go to the hospital
  5. What to bring to the hospital
  6. Appropriate treatments to receive in the hospital
  7. Explanations for other doctors who may not as be familiar with you

Every person’s pain level and frequency vary, so what works for someone else may not work for you. A personalized plan can help you be in more control of your own care.

Working with school and daycare staff

Children with SCD do not have learning difficulties. However, fatigue and pain can affect their ability to concentrate. They may also be absent more often because of doctor’s appointments or pain episodes. Teens with SCD are also transitioning to adult care while balancing normal childhood struggles of self-concept and self-esteem.3,4

Talk to teachers or other school staff about the disease. Many students with SCD feel that teachers lack empathy and knowledge of SCD. Meeting teachers can help them understand how to help your child stay healthy and succeed in school.3

In this meeting, communicate to teachers and staff that they can support your child by:1,4

  • Ensuring they have enough access to water and hydration
  • Allowing frequent bathroom breaks
  • Allowing accommodations during extreme temperatures and physical education
  • Learning how to take care of injuries
  • Watching for signs of stroke
  • Watching out for their emotional well-being
  • Maintaining open communication with you
  • Knowing when to seek medical care

Adopting a healthy lifestyle

Staying physically healthy can reduce complications of SCD and help you do the activities you enjoy. Here are some tips for staying as healthy possible:1

  • Learn as much as possible about the disease
  • Get routine follow-up care from doctors who are experts in SCD
  • Prevent infections by washing your hands often and staying up-to-date on vaccinations
  • Avoid triggers like dehydration, stress, high altitudes, and extreme temperatures
  • Exercise moderately
  • Maintain a healthy diet
  • Limit alcohol and avoid smoking

Talk to your doctor for resources to learn more about SCD. This can help you be more in control of the disease. Your doctor can also advise you on exercises and diets that are right for you.

Taking care of your mental health

People with SCD have a higher risk for depression and anxiety. Depression is linked to increased sensitivity to pain, greater healthcare use, and sleep disturbance. Taking care of your mental and emotional well-being can help reduce complications and improve your quality of life. Here are some ways that people with SCD take care of their mental health:5-7

  • Build a strong support system of friends and family
  • Find healthy coping mechanisms, such as spirituality, creative activities, nature, and socializing
  • Join support groups or communities
  • Ask for help when you need it
  • Find someone to talk to, such as a counselor or therapist

Living with sickle cell trait

If you carry only 1 copy of the sickle hemoglobin gene, you have sickle cell trait. People with sickle cell trait do not have any symptoms of SCD, but in rare cases can experience pain episodes triggered by dehydration or high altitudes. Some people with sickle cell trait have experienced heat stroke and muscle breakdown after intense exercise.8

You may pass down the sickle hemoglobin gene to your kids. If you and your partner both have sickle cell trait, there is a 25 percent chance that your child will have SCD. Talk to your doctor or a genetic counselor about options and advice if you plan to have children.8

Caring for people with sickle cell disease

Caring for a loved one with SCD can be challenging and overwhelming. Here are some tips for providing the best care for your loved one while maintaining your own mental health:9,10

  1. Learn and avoid triggers of pain crises
  2. Join a support group for SCD caregivers
  3. Ask your doctors and other experts questions
  4. Help them take control of their care
  5. Take time for your own social relationships, goals, and hobbies
  6. Find someone to talk to, such as a therapist or counselor

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Written by: Matthew Zajac | Last reviewed: January 2021