portrait of advocate Rhedd Maya

Rhedd's Sickle Cell Disease Journey

The Editorial Team at Sickle-Cell.com is highlighting people in the sickle cell community and their journeys in a series of Instagram Interviews. We talked to Rhedd, aka @rhedd_maya, about her sickle cell story and what it means to be a sickle cell warrior.

Rhedd's sickle cell journey

Bullied from an early age

I’ve had so many experiences with sickle cell disease (SCD). As a growing child, I had no friends. If anyone talked to me, it was to mock, insult, or call me names (names like “Okyena mewu,” which means "I’ll die tomorrow” were attributed to my person because of my sick state). Parents would never let their kids near me because they feared SCD was contagious. Those who bullied me made it clear that a "sick girl" like me shouldn’t be in their midst ... "It’s a shame you’re just a sick little thing,” they often said. I hated school because of these things.

When I got to junior high school, my crises got worse. I wore trousers and long sleeves to school even though it wasn’t the appropriate school attire. I was odd, and as the stigma got worse, no one would even sit with me during lunch break to eat. I was miserable. Anytime something went wrong or missing or there was a bad smell, I was the first suspect.

Growing up in Ghana

Having sickle cell in Ghana is almost equal to being an outcast. People will remind you every day that you don’t belong. After my mum passed away, I had to go live with my aunty. She would remind me every day that I was useless. She would say, “It would have been better if you weren’t born.”

My experiences with SCD include my mum (SC), friends (deceased and alive, had it too), and schoolmates (had/have SCD). I took more interest in SCD when I had a lung infection from 2012 to 2013. It was then I realized that being sickled goes beyond crises, anemia, fatigue, respiratory issues, and frequent yeast infections. It affects organs too. SCD does not only kill, it destroys the quality of life, love life, work, and everything about existence. I have heard, seen, felt, and am still dealing with its unpleasantries.

Other experiences I will share in my documentaries, Instagram live, radio and tv interviews, a movie I’m working on, and hopefully a book sometime in the future. It’s beautiful also, seeing someone (SCD patients) so feeble but strong, like a cat with nine lives. I think that is badass and superhuman. It's brave that in all the weakness and incapabilities, we still try to race with everyone else. I’m proud of that, and that is what keeps me going.

Becoming a parent

Editorial: Does your child have sickle cell disease? And how do you navigate sickle cell as a parent?
Rhedd: Fortunately, the answer is no. My daughter is only a carrier with the AS genotype. Navigating as a parent when it comes to SCD, I must say, has not been easy for me. My daughter lives in Tamale with my step-mum, and I live in Accra. The reason is I can’t handle the stress of parenting alone (because I live alone) and in case of a crisis ... who would take care of her? It’s tough, but I’ve come to accept it, and we make the best out of the few times we spend together.

Becoming an Instagram influencer

Editorial: What led you to sharing about your sickle cell journey on Instagram? How else do you advocate for sickle cell?
Rhedd: I’ve always wanted to share my journey, but the society I grew up in frowns on “negative talk.” You know, the kind in which saying you are sick is rewarded with frowns. “You are a child of God, don’t accept it, rebuke it, don’t talk like that” kind of society. So I was afraid to even suggest it.

Getting the courage to speak out

In 2015, I mastered all courage to speak out but was rewarded with a bad breakup. My partner then felt disgusted that I was telling the whole world about my weakness (SCD) and claimed it was bad for his image. The heartbreak forced me to drop my campaign, but after years passed, I found strength in accepting my condition and no longer cared about the prejudices. Yes, I’m sickled. Yes, I know what that means. Yes, I know people will not like this, but so what? At the end of the day it’s just going to be me and other warriors, so if I lose the people around me because I want to make an effort to stop the pain of SCD, so be it.

The truth is, no one can understand us (SCD warriors) better than ourselves, and if talking about it will get at least 1 person to do good, then that is a lot of victory. So, that has been my agenda ever since. I can do it all alone, but with time, others will see the importance of this cause and join in to help STOP THE PAIN OF SCD.

My job as NOB's ambassador has just begun. I’m getting some support from the NOB Foundation to fund my projects and sharing my personal experiences with SCD. And these are some of the objectives I hope to accomplish.

Follow Rhedd's sickle cell journey on Instagram at @rhedd_maya!

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