Friends & Family

There are many ways that you can support a family member or friend who has sickle cell disease.

Educate yourself about Sickle Cell Disease.

One of the most difficult challenges for people with sickle cell is that their symptoms are not always visible. Sickle cell disease affects the body’s red blood cells and causes pain, which may affect function, energy, and mood. By learning about how sickle cell can affect your friend or relative, you can better understand, support, and help advocate for their needs.

Be a medical advocate.

Your friend or family member with sickle cell disease may ask you to help interact with their medical care team. Ways you may be asked to help include:

Help with appointments. Accompanying your friend or relative as a trusted companion at appointments can help ease stress and provide reassurance. Here are a few ways you may be asked to help:
- Bring the essentials:
  - Copy of the phone number for the medical team (in case you are delayed on the way or need directions)
  - List of medications and allergies
  - Think about what else they may need during the day, examples may include a bottle of water, a small snack, an extra sweater or jacket, any medications they may need.
- Transportation. Learn about the route to take and allow for extra time in case of delays.
- Parking. Some appointments are in big medical centers with parking far from the actual office. Read ahead of time about patient drop off locations and parking validation.
- Navigation. Familiarize yourself with a map of the hospital or office if it is a large center. Having a copy of the map can be helpful, too.
- Don’t mind the wait. There can be a lot of down time during appointments. Bring some entertainment or reading material.
- Know your role. Ask your friend or relative if they’d like for you to speak during the appointment. Ask if they would like you to help provide any details or ask any questions on their behalf. You may be able to help provide notes about symptoms, a current list of medications, or questions about new treatments.
Emergency contact. Your friend or relative may list you as an emergency contact.
Health care proxy. Your friend or family member may ask you to talk with their care team by phone or through online messaging if they are unable to do so themselves. To do this, you will need to sign paperwork that allows you to communicate with the care team to provide healthcare information. Completing this paperwork before it is needed can save time later.

Help with Pain Relief

Offer help with treating pain. This can be by helping pickup medications, applying heat pads, offering massages, or helping with breathing techniques. You can also try activities to help distract them and help them relax.

Talk about their pain crisis plan.

If your friend or relative is open to receiving help, ask them about what you can do when they are having a pain crisis.

Symptoms. Pain crises are extremely painful, can happen at any moment and can freeze them in pain. Learn about what symptoms they typically feel with a pain crisis and what they should do to help manage those symptoms.
Triggers. Learn about the common triggers of pain crises and ask them if they would like your help to avoid those triggers. For example, people with sickle cell should avoid dehydration or prolonged periods of physical overexertion.
Transport. Sometimes they may need to get advanced treatment at the hospital during a crisis. Where is the nearest emergency room and will you be able to get them there safely?

Support their self-care journey.

There is a wide variety of self-care techniques that can help people manage some aspects of sickle cell symptoms. These self-care techniques can be used in combination with clinical care or on their own. To are several things that you can do to support friends and family members on their self-care journey:

Ask them if they have any self-care goals related to relaxation techniques, nutrition, physical activity, or sleep.
If they don’t have any self-care goals, you could ask them if they would like help setting goals or scheduling time for self-care during the week.
Encourage the person on their journey by participating in some self-care activities with them such as going for a walk, playing with a pet, listening to music, or calling a family member or friend.
Having sickle cell can be incredibly isolating at times. Help them find a community they can be a part of and help them build a support network, joining it if you are able.

Caring for someone with sickle cell disease can be stressful and may affect your physical and mental health. For example, if the person you care for is your spouse or partner, the impact of their sickle cell symptoms may make it hard to sleep in the same bed.

Inform Caretakers

Let teachers, day care workers and other adults who participate in your child’s care know why they may need more frequent water breaks, bathroom breaks, and other issues. The CDC has created a booklet for teachers on how to support students who have sickle cell disease.