Shattering the Stereotypes of Sickle Cell Disease and Overcoming the Misconceptions and Stigma in the Process
Sickle cell disease is a chronic and debilitating illness, an inherited blood disorder without an affordable cure. Patients regularly end up in the hospital seeking relief from pain crises resulting from the sickling of their red blood cells, which makes it harder to move through their organs and can cause immense agony.
But the suffering doesn’t end there because these sickle cell warriors, yes, patients are called warriors because they’re constantly battling this disease, also face another kind of torture.
The stigma surrounding sickle cell disease (SCD) is pervasive. The misconceptions and stereotypes follow warriors around. Most people don’t understand the illness, and how it affects each warrior differently.
The CEO of the Sickle Cell Foundation of Georgia, Tabatha McGee, understands and that’s partly why the foundation launched a new TV series called “Unveiling Sickle Cell: Beyond the Pain.” The show seeks to shed light on the disease while shattering stereotypes and helping educate people about what it means to live with SCD.
McGee talked with two experts in an effort to do just that. Mia Robinson is the executive director of Sickle Cell Awareness 365, a non-profit she founded dedicated to providing financial support and resources to families affected by SCD. And Krystle Stone is a clinical researcher on SCD and the founder of the Beyond Sickle Cell Disease Foundation.
Both women are advocated but they are both warriors themselves.
Stone says she wants to be the face of sickle cell, that she is the face of SCD, but she worries about the misconceptions. That’s because she’s lucky. She’s hardly ever sick and that’s not the case for so many.
I’m always feeling good, but I don’t want to take away from a person that’s not doing well,” Stone explained.
“So that’s why I always have to keep that in front to break that stigma, that we are who we are, just like snowflakes. There’s no two that’s the same … Just being that person, I can run fast and I can do what I need to do because that person’s that’s always sick is not able to.”
McGee pointed out that Stone is “in essence providing hope because again one of the stereotypes is that everyone’s always sick and always in pain, but that’s absolutely not the truth.”
Stone is essentially living well with sickle cell, McGee pointed out.
Part of the stigma and stereotyping that unfortunately goes hand in hand with this illness happens at clinics, hospitals and doctor’s offices when warriors are at their lowest point and seeking help.
Robinson knows the story all too well and says even when warriors are speaking up, they’re still not always heard.
“If we’re in the hospital and we’re receiving treatment that is unfair, unjust, regardless of what we say and how we say it, sometimes they’re still not hearing us, and it takes more than just us being upset in the hospital. It takes so many more layers to be heard,” she explained.
“For a long time and because this is an invisible disease, for a long time we have been unseen and unheard,” she added.
But times are changing, and Robinson told McGee the good news is that in medical care facilities and in more and more places, more and more warriors are finally being seen and heard.
Tune in to “Unveiling Sickle Cell: Beyond the Pain” to hear more from Robinson and Stone about how advocates are finally making progress on educating people on sickle cell disease.
-By Shelby Lin Erdman