Last September, as part of Sickle Cell Awareness Month, I wrote a blog about my experience with sickle cell disease (SCD). I shared that in 2019, my son, Landon, was born with the disease. In 2020, he had a bone marrow transplant, and his sister, Avery, was his bone marrow donor.
I’m happy to say that Landon is now a thriving four year old. The transplant provided the cure we hoped for. But SCD is still part of my life — as a doctor, an advocate, and, most importantly, a mom.
What is SCD?
SCD is the name given to a group of rare, inherited blood disorders. In the U.S., nearly 100,000 people have SCD, with Black and African-American people being most often affected. My husband and I both have the genetic trait for SCD, but we don’t have the disease. Having the trait does not always mean you will develop the disease. But when two people who both have the trait have a child, there is a strong chance the child will develop SCD. My daughter Avery does not have the disease, but my son Landon does.
With SCD, blood cells don’t carry enough oxygen, so people with the disease are often very tired. Symptoms worsen as you get older. The disease causes pain that is hard to control, even with medicine. SCD affects every organ in the body, and complications often lead to hospitalization.
Families with SCD Need Support
As a doctor, I am trained to deal with illness. But being the parent of a child with SCD changed my life. I am in the process of writing an e-book about our experience, to help other families affected by SCD. I feel a great sense of purpose in sharing our story. The e-book will have sections for parents and children, so they can learn about this disease together. It will also include inspirational passages and excerpts from the diary I kept when Landon was going through treatment.
I want to tell our story for three reasons:
- To share a doctor’s knowledge. I felt comfortable talking to Landon’s doctors because I am a doctor. I understood why he was sick. I could weigh the risks and benefits of the transplant. My medical training made it easy for me. But most parents don’t have that knowledge. I want to explain SCD in a way that parents and children can understand.
- To share a mom’s fears. Even though I understood what was happening to Landon, it didn’t take away the stress and anxiety. Thinking about your child having a transplant is scary. And thinking about a failed transplant is even scarier. Being a doctor doesn’t make you less emotional. Our story lets people know it’s OK to be scared.
- To share a family’s triumph. Only Landon had SCD, but our entire family was affected by it. We supported him during his treatment and recovery. Our experience shows what is possible when you have hope in science, prayer, and the power of family and friends. With support, you can get through anything.
Volunteering is Empowering
After Landon’s transplant, I wanted to help families like ours. I learned that The Cellular Therapy and Transplant Section at Children’s Hospital of Philadelphia (CHOP) has volunteer opportunities to support patients and families who are new to the transplant process. Peer-connect training is coordinated through Be the Match, which is operated by the National Marrow Donor Program.
I recently completed my training as a peer-connect volunteer. I know first-hand that preparing a child for a transplant is stressful. This decision can have life-changing impacts. It’s easy to feel overwhelmed, and sometimes people lose faith. As a peer-connect volunteer, I can provide support and give parents a safe space to share their fears.
More Awareness is Needed
One of my other passions is increasing awareness about SCD outside the SCD community. This includes efforts like blood drives, which can help educate people about the disease and its impact.
When it comes to research, funding for SCD is improving, but it is still not enough. More money is needed to find treatments and cures. Landon’s transplant was successful because he was a good candidate for transplant and Avery could be his donor. But not everyone with SCD can receive a transplant or find a donor. So, research is needed to develop treatments that can benefit all SCD patients.
In general, funding is low for diseases that primarily affect minorities, but there are lots of ways to support SCD initiatives. Both CHOP and the Sickle Cell Disease Association of America are well known for their ongoing efforts to find a cure for SCD. The National Institutes of Health has supported SCD research for more than 50 years. Cure Sickle Cell Initiative is an organization that is building a community of patients, advocates, and researchers to foster greater awareness about the disease and the need for a cure. And Be the Match offers great volunteer opportunities for people who want to help.
I also believe that people with SCD need better access to mental health care. Managing the pain and side effects of SCD is stressful. Unfortunately, this reality is often overlooked. Many with the disease often struggle in silence with anxiety and depression on top of intense physical pain. People in communities of color tend to have their mental health needs minimized. And stigmas within the community about mental health care create additional barriers. These barriers and disparities need to be addressed to improve the overall quality of life for those with SCD.
Let’s Talk About It
The transplant made Landon’s blood cells normal, but he still carries the gene for SCD. This means he can pass the gene to his future children, so we will need to teach him more about his condition as he gets older.
If you have a loved one with SCD, I encourage you to learn all you can about the disease. Families with SCD need support. Take advantage of online and in-person resources. Find culturally competent doctors who understand SCD and its impact on families. Ask doctors to explain things in ways that make sense to you. Encourage your loved one to share their concerns or fears and let them know that talking with a mental health professional can help. And remember that most hospitals can connect you to people like me, who are ready to support you on this journey.