Managing the Disease
Samone Meatchem was first diagnosed with sickle cell disease when she was 2 weeks old. Because of her high risk of stroke, she has received regular blood transfusions every 4 weeks since the age of 3, and this proved to be effective treatment.
However, the threat of iron overload in the body prompted her care team at the Comprehensive Sickle Cell Center to transition her to blood exchanges (apheresis) last year. Samone has endured ups and downs, but now at 17 is doing much better and enjoying time on YouTube and talking with younger patients.
Whenever she meets a young sickle cell patient, Samone talks candidly about the associated pain that many patients have. And while pain is an expected symptom without optimal treatment of sickle cell disease, daily suffering shouldn’t be.
“I just try and encourage them to tell their mom every time they are having pain. To feel comfortable talking to their parents about what is going on,” said Samone. “They’re little kids and they don’t know how much medicine they need to take. So, it’s important they talk to their parents about how long they’ve been hurting.”
She learned this valuable lesson early in life from both of her parents.
“I’ve been a big advocate for her since Day One,” said her mom, Lisa. “I’ve taught her how to ask questions and to understand what’s going on. “She’s gone through more than the average adult has gone through. Most people can’t imagine one blood transfusion, let along one every four weeks for 12 years.”
Thankfully, the transfusions have prevented any strokes and many complications of her disease and helped keep her pain to a minimum – as the blood exchanges (apheresis) do now. Medication is another option to manage the pain as needed, but the goal is to remove all opiate-based medication from Samone’s treatment.
For the most part, Samone prefers to sleep when the pain is intolerable and also keeps herself busy with friends, family and online social media.
She likes watching videos and even has her own YouTube channel (Samone Conquers Sickle Cell). She plans to add more videos related to her life journey with sickle cell, her doctor appointments, and possibly some “mukbangs” – live, online videos in which the host eats food while interacting with the audience.
“I love to eat seafood. When I get the chance, I want to get a big pot of crab legs, shrimp, corn and potatoes and make a video of me eating it,” she added. “Oh, and lobster tail!”
Whether it’s making videos, working at Wendy’s part-time or just hanging out with her younger sister, Sarenity, 13, Samone knows everything has been made possible thanks to the care she receives at Cincinnati Children’s.
“They really care. I love that they tend to you 24/7,” said Samone. “I get really good care when I’m there. I love it.”
Helping Younger Patients
Patients can be treated well into their adult years – and Samone will be no exception – but Lisa has long thought of her daughter’s future.
In fact, she created the Cincinnati-based Sickle Cell Alliance Foundation (SCAF) when Samone was 13 years old to help patients who are making the transition from pediatric to adult care. It’s through the SCAF that Samone is able to meet and mentor younger sickle cell patients.
“I’ll just go and sit and talk with them. I enjoy doing it,” said Samone.
“Over the years the event continues to grow with more donations, more walkers and more people interested in what we’re doing,” said Lisa.
With the money raised, the SCAF has given scholarships to local students the past three years. Social workers with Cincinnati Children’s provide recommendations based on age and continuing education plans. Graduating seniors can apply for scholarships on the SCAF website.
Lisa reminds all Sickle Cell patients to remain hopeful. Her grandmother had sickle cell and lived to 83 despite a life expectancy of 40.
"You can live your life living with this disease,” she said. “Yes, you have to make adjustments and you have to miss some things. But that doesn’t mean you have to give up.”