I Will Keep Fighting for Greater Awareness of Sickle Cell Disease
I have been a volunteer for a charity organization called Give Blood Spread Love for a couple years. We drop in on people at their work and other community establishments to raise awareness about sickle cell disease and blood donation. During these sessions, I speak about the different aspects of my journey with the disease, such as growing up with it and managing it in the workplace as an adult.
These sessions help to shed light on sickle cell, which often is referred to as an invisible disorder. They are always engaging, and people ask many questions. This audience participation always encourages me to believe that people will take what they’ve learned and help to make a difference.
Turning my personal difficulties into a tool to encourage others usually leaves me feeling tired, yet fulfilled. The fatigue comes from sharing traumatic experiences. This emotional strain takes its toll, but I always tell myself that it’s worth it, that it’ll produce many positive things.
I hope this seed of knowledge I’ve imparted to others will lead to some form of action — that audience members will donate blood and spread the word about sickle cell disease, which will bring change to our community. During a recent session, a teammate encouraged listeners to turn awareness into action, which is what we want to see.
However, after the last session, I scrolled through my social media and saw that blood supplies from donors were running low here in the U.K. Blood donations are necessary for blood transfusions, an important treatment for patients with sickle cell disease. If blood supplies run low, it puts patients at risk for missing treatment. So my usual sense of accomplishment turned sour as I asked myself, what’s the point?
I shouldn’t have responded this way, but I felt as if the change I’d been hoping for all these years wasn’t happening. I know it’s irrational to think that my efforts might prompt enough donors to come forward to supply the entire country, but it was a stark reminder that the work I’ve been doing is a drop in a vast ocean of need.
Once I got over that feeling of incompetence, I could see the bigger picture. I’m just one person, and I’ll never be able to quantify how much I’m helping to increase the number of blood donors. I must believe in the community around me and hope that the voices of those who advocate for change will be heard, and that one day, awareness will turn into action.
I won’t give up hope and will continue educating people about sickle cell disease and blood donation. Here’s what I hope people will take away from my efforts:
Learning about sickle cell
I encourage everyone to learn about your genotype and whether you have the sickle cell trait, especially during family planning. Additionally, please support charities that are dedicated to helping people with sickle cell. Help to move the discussion forward and spread awareness in your social groups.
Becoming a donor
Sign up to become a blood donor. If you’re unable to donate blood for health reasons, encourage someone to donate in your name. Speak to others about blood donation so that they can become donors, too.
Let’s turn awareness into action.
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.