Sickle Cell Warrior Uses Voice To Advocate For Fellow Patients

Sickle Cell Warrior Uses Voice To Advocate For Fellow Patients

“I use the word warrior a lot when I talk about people who battle with sickle cell disease and their families because a lot of times it is a battle.”

It’s a battle 33-year-old Stephanie Ramos knows all too well. It’s one she’s been fighting since birth.

“I was born with Sickle Cell disease. I have a twin brother who has the Sickle Cell trait.”

From roughly six months of age that meant episodes or “crises” as Ramos describes it, each time requiring lifesaving blood transfusions to alleviate what she recalls as tortuous pain.

“If you asked any Sickle Cell warrior, they would tell you it feels like being stabbed. It feels like being hit with a bat. Every second, every minute, every hour that it’s not being treated or taken care of.”

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. The disease distorts soft and round red blood cells and turns them 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 stroke.

“It causes a decaying effect in that particular part of the body,” Ramos explains. “It’s not getting the proper oxygen it needs so it starts to die and that’s what we call an episode. It’s pain and a lot of times it causes hospitalization and then most importantly, that leads to a blood transfusion.”

Ramos estimates that she received at least two blood transfusions per year from birth to age 25. In some cases, patients may require as many as 100 units of blood per patient per year to combat the painful effects.

“I always had to take a pack or two of blood. It’s a scary thing. Receiving life from someone I don’t even know. When you donate, you’re donating to someone like me who is in need and it’s needed more than ever.”

Like so many battling Sickle Cell disease, Ramos knows that frequent blood transfusions can make

finding compatible blood types much more difficult and that most often, donations from Black and Brown donors are the most compatible blood types for treatment.

Because of that, Ramos says she was forced to find her advocacy voice – for herself and now others, at a very young age.

“They pump new blood into us. Literally,” she explains. “So, when I tell people about donating blood, I tell them you are literally giving life again to someone whose life is fading away. When I speak to individuals from my background, from my Black and Brown communities, I say we scream that all lives matter – well, this is the start. If my life matters and yours does as well this is the start to show how much we matter to each other, by donating.”

In remission since a bone marrow transplant eight years ago, Ramos is now using her voice to help her fellow warriors through Sickle Cell Advocates of Rochester, or S.C.A.R. The group works to support patients and families affected by Sickle Cell in the Rochester area, hosting educational and social events, fundraising and much more.

“I use my voice because it’s all I’ve ever had. This is part of our toolbox. I’m lucky to be a person who walks in faith and since I can’t donate, let me be a person who can use my words to help bring others to donate and serve as an advocate.”

Part of Ramos’ own toolbox is hosting blood drives through S.C.A.R. and regularly encouraging others in the community to donate. While she recognizes a fear associated with donating, she has this to say on behalf of her fellow warriors.

“We have to watch out for our communities, because if we’re not looking out for ourselves, who is? If fear is the reason you don’t want to donate, then volunteer. Help us out and maybe you’ll learn it’s not a scary thing. And know that for two seconds of being scared, you just gave someone another two seconds of life back.”

One in three African American blood donors are a match for people with Sickle Cell disease. To help ensure patients have the lifesaving blood products they need, the American Red Cross of Western New York works with partners like S.C.A.R. to grow the number of compatible donors. You can help Sickle Cell warriors in the community by making an appointment to donate by visiting RedCrossBlood.org, calling 1-800-REDCROSS or downloading the FREE Blood Donor App on your smartphone.