From Doctor to Advocate: A Sickle Cell Disease Journey

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.