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Meeting Others With Sickle Cell

As a child, I felt I was the only person in the world with sickle cell anemia. Silly me. It wasn’t completely my fault, though.

I hadn’t met anyone else with my disease. It wasn’t until middle school anyone had even told me there were other patients with sickle cell in the hospital too. Or maybe they had before and it just hadn’t clicked until much later.

Connecting the dots

It wasn’t until college that I really got exposed to the sickle cell community. I started actively searching to be part of it. I did research with sickle cell experts and shadowed hematologists who cared for sickle cell patients.

I’ll never forget the first time I was volunteering in the hospital and met a child, no older than I had been when I was diagnosed, with sickle cell. I remember telling him that I had sickle cell too and that he would be okay, better than okay because if I could make it, then he could too. That moment and the hope for more moments like it have inspired my entire career.

Finding community

Then, later in college, my hematologist told me about a camp only for kids with sickle cell. I was unbelievably excited to go; how had I never heard of such a thing before?!

I was of course too old to be a camp participant but got to volunteer as a camp leader. I spent an entire week surrounded by kids who had sickle cell disease or trait and adults who were passionate about caring for them. It changed my whole perspective.

At the camp, I also met someone 10 years older than me who had sickle cell anemia and told me of someone else he knows in their 60s with our disease! Up until then, I had only heard of people with sickle cell making it to age 30. But there he was in his 30s telling me about someone in their 60s living with sickle cell!

He added me to a group of adults of all ages also living with sickle cell. From then on it was my mission to talk about people living and thriving with sickle cell.

Getting involved

Before going to that camp, I hadn’t really been part of the sickle cell community. Sure, I had been part of the researchers and providers, but not in the community. I started attending events and participating in fundraisers meeting more and more people with sickle cell.

My story became inspirational to others living with my disease and their existence became inspirational to me. Now, I’m part of several committees and communities made up of those with sickle cell and the people who care for them or just support them. And I’m starting to have a whole new dream.

Finding purpose in the sickle cell community

I used to be set on the idea of becoming a doctor to take care of others with sickle cell and let them know that they could be successful in whatever they wanted. But I don’t want to just be their doctor, I’ve never wanted to just be one thing. I want to be the person who helps others, especially those who society continuously neglects, follow their dreams, and reach their goals.

It brings me so much joy to know I helped someone succeed or helped them grow. And what better gift exists than a smile from a grateful heart.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Sickle-Cell.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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