Sickle Cell Families Must Build a Network of Support

After receiving the newborn screening results, my husband and I knew our daughter had sickle cell disease. The initial diagnosis is difficult because this is a chronic illness that impacts a person for their entire life. When you have a sickle cell support network of trusted individuals who love and support you, the early days, weeks, and months will become more bearable.

At first, I was fearful of reaching out to my family members and friends and sharing the news of my daughter's diagnosis. However, I knew telling others would help my immediate family members cope better. Trust me. Families do not have to carry the weight of sickle cell disease alone. There are a few ways to build a support network.

Reach out to family

First, start reaching out to family members who are trustworthy and willing to listen. Sometimes sickle cell disease is prevalent in families, and it's utterly new at other times.

The reality is that families usually don't fully understand how to be a support network for others with a chronic illness. Still, by being clear about what we need (someone to vent to, babysit while so self-care can be possible, or someone who will be present if hospitalization is necessary), they can be present when we need them most. Stating how we need support makes the expectations clear to those around us.

When I told my sisters and my mom, there was a wave of compassion I needed to be able to endure and navigate learning how to best take care of my daughter. If blood relatives are hard to trust or connect with about sickle cell, community-based organizations have members who understand and may be willing to fulfill the familial role.

Cultivate trusted friendships

Second, share your new reality with your friends. This friend could even be a local neighbor. There should be no judgment when telling others in your trusted circle.

After my daughter’s diagnosis, I shared the news with one close friend, and she became my go-to person who watched my other daughter when we had to go to the hospital. If you have other children and little family nearby, a friend or designated person is essential to babysit and care for your other children.

Partner with a care team

Next, keeping the communication lines open and building trust with your child’s healthcare team is beneficial. Sickle cell disease takes more than just learning how to cope with pain. The condition is complex and can get worse over time. Therefore, support from your child’s healthcare team can give peace of mind when you learn about the complexities of the disease or face unfortunate circumstances.

If you’re uncomfortable with your child’s healthcare team (such as the primary care provider, hematologist, nurse practitioner, dentist, eye doctor, etc.), you address your concerns and switch providers if necessary.

Involve your child's teachers

Lastly, your support network would significantly improve if you partner with your child's teachers. Everyone who engages your child or loved one regularly should learn what signs and symptoms to watch out for daily. Use books and websites as a resource to help our child's teacher understand what symptoms to watch out for daily. Children spend large amounts of time at school. Therefore the instructors need to act as your eyes and ears while your child is in their presence.

Build a reliable sickle cell support network

Caring for our loved ones living alone is extremely difficult; instead of isolating ourselves, we have to show others how to advocate for sickle cell families and support us. However, when we intentionally create a network of supporters, the experience changes drastically and becomes more tolerable. When sharing the news with other people, be honest, open, and transparent when explaining what sickle is and isn’t because many myths run rampant because of wrong information.

I want readers to weigh in because I’m curious to learn how you’ve built your inner support group for yourself or a loved one?