Sickle cell disease: building your support network

Sickle cell disease is a genetic disorder that affects the shape of red blood cells. Normally, red blood cells have a smooth, doughnut-like shape. This allows these cells to easily glide through blood vessels as they transport oxygen to cells and tissues, as well as carry carbon dioxide back to the lungs to be exhaled.

When a person has sickle cell disease, the body produces red blood cells that have a crescent or sickle shape. These cells are more fragile than healthy blood cells and break apart easily. This can lead to anemia, or low levels of functioning red blood cells. Sickled cells can also become stuck in blood vessels, causing pain crises (also known as vaso-occlusive crises).

During these episodes, blocked blood flow deprives parts of the body of oxygen, causing severe pain. These episodes can also cause organ damage and other serious complications.

People living with sickle cell disease can benefit from having a strong support network, a group of people who are able to provide help and assistance when needed.

Who makes up your support network?

Sickle cell disease is a different experience for everyone, so everyone’s support network will be a little bit different.

Some of the people who can be a part of a support network include:

Your healthcare providers

Sickle cell disease can impact nearly every part of a person’s life, and you will likely need to work with several healthcare providers with their own specialties. Treatment is often overseen by a hematologist that specializes in blood disorders, but a team can also include a primary care provider, specialty nurses, and other specialists.

Your healthcare team is there to support you. Be honest with your providers about what you are experiencing and how sickle cell disease is impacting your life. It helps to think of yourself as part of your healthcare team, and to take an active role in your treatment wherever possible.

Friends and loved ones

Sometimes referred to as social support, reliable friends and loved ones are valuable when managing a condition like sickle cell disease.

Pain crises can be debilitating and require emergency care. A pain crisis can last hours to days, but full recovery can take weeks with lingering pain. Many also experience significant fatigue.

A person will often need help with things like meals, transportation, and errands. They can also benefit from the emotional support that can be provided by a friend or loved one. Sickle cell disease is often socially isolating.

Support can also be invaluable during treatment. A person will often need caregiving support following a hospitalization, especially if the pain crisis requires continuing treatment with prescription pain medications.

Those who are able to explore treatments that can potentially cure sickle cell disease, like a blood stem cell transplant or gene therapy, will need support during the treatment process. These treatments involve intense chemotherapy, planned hospital stays, and long periods of recovery.

Take time to think about how sickle cell disease is impacting your life, what kind of support you wish you had in the past, and what kind of support you think you might need in the future. Think about who you can reach out to and when.

Social worker

A clinical or healthcare social worker can help you navigate the healthcare system, understand your diagnosis and treatment options, find ways to reduce the cost of care, and connect you with resources and support.

Counseling is another area where social workers can provide support. But also consider working with a counselor or a mental health specialist. Sickle cell disease is challenging to live with. Depression and anxiety are common. Many people with sickle cell disease have experienced prejudice and stigma. Counseling can help a person manage these types of challenges.

Counseling can also benefit caregivers and family members.

Support groups

Consider participating in a support group for people with sickle cell disease, either an online group or one that meets in person. It can help to connect with other people who have had similar experiences, to share what you’ve experienced, and to be a source of support to others.

Ask your healthcare providers if they can recommend a support group. You can also check with organizations like the Sickle Cell Disease Foundation or the American Sickle Cell Anemia Association.