Why I go into overdrive for Sickle Cell Awareness Month every September
I’ve never been ashamed of sickle cell, and use every opportunity to talk about it
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I’ve loved September for as long as I can remember because it is Sickle Cell Awareness Month.
At age 7, I attended Camp Jubilee, a weeklong summer camp for children with sickle cell disease. There, I learned we had our very own awareness month. As if being surrounded by other kids with sickle cell wasn’t the coolest thing ever, learning about our own awareness month made me so happy.
I’ve never been ashamed of having sickle cell. Even back then, I used every opportunity possible to talk about my illness. School projects, reciting a sickle cell poem during a pageant, and writing essays about living with sickle cell were common ways I taught people about it. So I guess it’s no surprise I grew into a nationally known sickle cell advocate.
As a sickle cell warrior and advocate, I see September as our time to really shine! I advocate for sickle cell 365 days a year, but for the 30 days of September, I go into overdrive, especially on my social media accounts.
Sharing my lived experience
I’m often told that I have a gift for sharing my lived experiences in a captivating and inspiring way. Last year, for Sickle Cell Awareness Month, I posted a daily thread about the topics that needed to be discussed or addressed in our community. One of the most popular was a post about what not to say to a sickle cell warrior.
I also started my Anime X Sickle Cell series, where I compared the realities of sickle cell to some of my favorite anime characters. I love anime as much as I love Sickle Cell Awareness Month, so I couldn’t wait to combine my two favorite interests. The series introduced so many new people to the disease, and my friends and family learned why I love anime so much.
Those two efforts allowed me to reach my highest view counts ever. I broke 100,000 views on my posts, and more than 100,000 people on Facebook alone watched or engaged with my content! That filled me with so much joy, which is why I’m doing both again this year.
My wedding was on Sept. 8, 2022. I asked my husband if we could get married in September for two reasons. The first is that we live in Texas, and the weather is usually the nicest this month. The second is because it’s Sickle Cell Awareness Month. My husband knows how important sickle cell is to me, so he happily agreed.
Sickle cell needs as much awareness and public attention as possible because there are still so many unmet needs and gaps in care for people who live with it. We’re still mistreated in hospitals, and people with sickle cell are still suffering, despite transformative therapies being developed for it. Most importantly, people with sickle cell are still dying.
So this September, join me in celebrating Sickle Cell Awareness Month by sharing posts on social media, donating blood, attending a sickle cell event, or donating to a sickle cell nonprofit. People with sickle cell disease are amazing, and we deserve support.
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.
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