Turning compassion into action to help fellow Sickle Cell Warriors

Passion, Passion, Passion!

Jason Moore exudes passion as he talks about Sickle Cell Warriors of Buffalo.

The vice president of the non-profit explains that “Sickle Cell Disease is the most commonly inherited disease in the world.”

Red blood cells carry oxygen throughout the body; in Sickle Cell Disease, the red blood cells are mutated into a crescent or sickle-shaped form, and therefore cannot carry enough oxygen to the tissues and organs of the body – potentially leading to anemia, and tissue and organ damage. This often requires regular blood transfusions to manage extreme pain and life-threatening complications.

Jason explained that having Sickle Cell disease is a lonely life. Each patient presents with different symptoms, requiring treatment to be adjusted accordingly. Jason is happy to have wonderful providers in Buffalo to manage his care.

Jason and and his colleague, Sickle Cell Warriors of Buffalo president Juanita McClain experienced their journey side-by-side while undergoing treatments at Children’s Hospital, and at specialized camps for children living with Sickle Cell. Their care when they were younger was overseen by social workers. When they “aged out” around 21 years of age, there was no one to guide their care. They came to realize how helpful their social workers were and how much they did for them. Thus, the idea for Sickle Cell Warriors of Buffalo was born.

Sickle Cell Warriors of Buffalo programs include Education to the Community, Transitions – a program to assist teens and parents in moving into adult medical care, Care Coordination – assisting adults in finding qualified practitioners, and Support Groups for Warriors and their families.

On Jason’s good days, he states that he accomplishes so much. He’s a Community Health Worker assisting others along their journey, while guiding the Transitions participants. But on other days, he is in pain and exhausted. However, he appreciates what goodness will come about and knows there is a light at the end of the tunnel.  Optimistic and passionate!

This Sickle Cell Awareness Month and year-round, you can help support Jason’s work and Sickle Cell patients just like him in your community, by making an appointment to roll up a sleeve and donate lifesaving blood. Visit RedCrossBlood.org, call 1-800-REDCROSS or download the free RedCross Blood Donor app to make an appointment nearest you.

 Written by: Ginny Scott, American Red Cross of WNY Communications Volunteer

"Much more than living with Sickle Cell": How a Buffalo teacher's healing journey is helping to heal others

Juanita McClain is many things: a mother, educator, friend, author and a warrior – in every sense of the word.

“I was diagnosed early on. At just a few months old I had my first crisis,” she explained. “I spent a lot of time in the hospital growing up. I went through a lot of the complications. Until my late 20’s, I struggled really bad.”

Sickle Cell disease is the most common genetic blood disorder in the United States, impacting an estimated 100,000 people – most of whom are of African descent. It distorts soft and round red blood cells and turns them hard and crescent-shaped. As a result, blood has difficulty flowing smoothly and carrying oxygen to the rest of the body, which can lead to severe pain, tissue and organ damage, anemia and even strokes. Patients may require as many as 100 units of blood per year to manage extreme pain and life-threatening complications.

McClain estimates that until her early 20’s she was in the hospital receiving treatment for Sickle Cell disease at least once or twice a month, every month. In that time, she received multiple blood transfusions, had surgery to remove her gallbladder and suffered the devastating loss of her son during childbirth in the midst of a difficult Sickle Cell crisis. Despite all that, McClain is quick to point out that her diagnosis does not define her.

Instead, it’s all she’s been able to selflessly accomplish in the face of it.

“I was in college, and I was sick and missing school all the time. I started researching more about Sickle Cell and journaling about how I’d like to change my life,” she explains. “And I said I want to share my story with the world, so I wrote Living with and Surviving Sickle Cell Disease. I feel like it’s an autobiography of my life. After the book came out, I felt a relief over my life and things started to look brighter, so I kept going with it.”

McClain is now the proud author of three books on Sickle Cell disease, including a children’s book titled The Monster Within Me: Surviving Sickle Cell Disease; an educational story that serves as both a way for children to learn about Sickle Cell and to inspire them to achieve their dreams.

It was during this time that McClain, armed with the knowledge of the disease and her own triggers, began her advocacy work in the community. In that time, McClain has worked tirelessly to educate the community and her students at Burgard High School in Buffalo on the impact of Sickle Cell and blood donation; and helped to organize blood drives with the Red Cross ofWestern New York where she also serves on the Red Cross Biomed Committee. In 2018, McClain also launched a Sickle Cell warriors support group which has since grown into the non-profit Sickle Cell Warriors of Buffalo.

“It opens up doors for Sickle Cell warriors who have to get those frequent blood transfusions to be able to get the blood type they need, of their own blood type or race,” she explained. “My background and experience with the disease, I used those to help me grow as a person and to help me get healthier and live with the disease. And when that sparked, it made me want to do more to help others do a turn around in life and look at the disease in a different manner and want to be more than just living with Sickle Cell disease. And here we are today, and we’re doing so much!”

This fall, McClain’s students will help her to organize two blood drives with the Red Cross of Western New York as she also plans a number of community events with Sickle Cell Warriors of Buffalo, including a walk for Sickle Cell awareness, now in its fifth year, and a holiday event to help support local families impacted by Sickle Cell.

As for the mother of three and her own battle, she has this to say of her journey: “I feel the best that I’ve ever felt in my life these days. Things have improved drastically.”