Her siblings have sickle cell disease. This CHOP health researcher wants to help others like them.

Sickle cell disease, a genetic blood disorder, affects about 100,000 Americans. Millions more carry the gene, which can get passed down through generations, and may not know it.

Philadelphia and other cities nationwide marked World Sickle Cell Awareness Day last week, with many of the city’s iconic structures — from Boathouse Row to the Franklin Square Fountain — illuminated with red light.

Tanisha Belton, a health researcher at Children’s Hospital of Philadelphia, first learned about the disease when her twin sisters were diagnosed with it as newborns. Since 2018, she’s worked on a project, funded by D.C.-based nonprofit Patient-Centered Outcomes Research Institute (PCORI), to help young adults with sickle cell disease transition from a pediatrician to a general health-care provider and teach them how to manage the disease on their own.

Belton, who has a doctorate in public health, also serves as senior manager of research initiatives at CHOP’s PolicyLab, a center focused on translating academic research into community programs. Belton spoke to The Inquirer about sickle cell disease, her ongoing research, and what drew her to public health. This conversation has been edited for length and clarity.

It’s an inherited blood disorder. Blood cells are normally a circle, but folks with sickle cell have crescent-shaped blood cells, so that prevents the oxygen from flowing and the blood from flowing normally. Typically, it affects those with an African decent, so obviously African Americans. One in 13 Black or African American babies is born with the sickle cell trait.

In terms of symptoms, severe pain can occur. It’s from the fact that your blood is not passing through your body the way that it should. I think everyone describes the pain differently. Some people describe a burning sensation. Some just can’t describe it, or say it’s like a chest pain or pain in their arms and legs. Some get blood transfusions weekly or monthly depending on the severity of the disease, which can cause anemia and increase risk of infections.

I was 12 when my twin sisters were diagnosed with it as newborns. At the time, my family knew nothing about it. Their first year or two of life, they were in and out of CHOP’s emergency room and had a number of overnight stays because of fevers and infections. I remember helping my mom administer liquid iron supplements and antibiotics to these little babies who didn’t want to take this medicine.

As they got older, we needed to let CHOP know if we were traveling, so they could tell us where the nearest hospital with a sickle cell center was and bring medical documentation with us to present to the hospital if something happened. As I got older, I thought, ‘How can I learn more to ultimately support them?’

They’ll be 26 next month, both working young ladies, living a fairly healthy life. I think sometimes they forget that they’ve been living with the disease because they have been blessed and they haven’t had many hospital stays or a need for being on transfusions on a regular basis.

It’s to help youth living with sickle cell — teaching them to manage their disease on their own, instead of parents making your appointments and managing medications. We’re comparing the effectiveness of two interventions in helping young adults develop self-management skills: a mobile health app and a community health worker. We built an app, and we employed community health workers who actually have the disease.

We had 405 participants from five pediatric sites — CHOP, St. Christopher’s Hospital for Children, Northwell Health in New York, Cincinnati Children’s, and Connecticut Children’s hospitals. Our last group of folks will finish their surveys this month. They all loved the community health worker intervention. I think having someone who could identify with them helped folks feel a little more comfortable.

» READ MORE: For patients fighting sickle cell disease, finding compassionate care is part of the battle

I always had an interest in medicine but to be honest, the classes weren’t for me. I started off as a biology major and then those science classes were kicking my butt. The initial plan was to hopefully be a pediatrician one day. But I said, ‘Well, how else can I still have an impact on people’s lives without having the medical degree?’

It’s bringing so much attention to the field of sickle cell. Historically, there isn’t much funding in this space, so to see that the time has been taken to conduct clinical trials to figure out if there was a way to edit genes to potentially cure folks with sickle cell is just amazing.

Being in this space has shown me that you never know what someone is facing. You could work with someone who has sickle cell who shows up every day, and you don’t even know it. It’s a disease that needs to be seen and needs to be researched and funded. We’re excited that folks are living longer with it. Folks living with sickle cell can have families, can live until their old age and that shows that the work we are doing matters.