Raising Sickle Cell Awareness in Memory of Israel Adeoye.
So my nephew (by way of marriage), Israel Oluwamide Adeoye, passed away 3 weeks ago from Sickle Cell Disease at the age of 27.
After his death, I discovered his TikTok page and proceeded to listen to all of his videos and learned more about his experiences with the disease and specifically with the medical establishment.
Y’all! I was appalled. And slightly embarrassed for not having known more while this was happening. I’ve known sickle cell exists and could have rambled off a brief definition of what it was in terms of its etiology. What I did NOT know was the ravaging way in which it affects people’s actual daily lives and an inside look at what the day-to-day looks like for those going through it. Listening to his stories deeply humbled me.
When I met my husband, it was on our second date that he asked me about my status and if I was a carrier for sickle cell trait (AS). I did not know. Still don’t know actually. But because he knew he was AA (a non-carrier), I guess it didn’t matter for us so much in terms of carrying on dating. But I understand now why we had that conversation so early on.
I also learned from one of Israel’s TikToks that Sickle Cell Awareness Day is the same day as Juneteenth. He was disheartened that the Juneteenth holiday overshadowed Sickle Cell Awareness Day and wanted more people to know about the disease. He often ended his videos detailing his medical abuse with a charge for us to help and “do something about it.” I kinda took that charge to heart.
In honor of Israel, and all Sickle Cell Warriors, I wanted to take up his cause and do my small part to help with raising awareness. We are all we got y’all! Back in the 70’s the Black Panther Party saw this need and they were fighting for this awareness too. One of the main initiatives for the Party setting up the free health clinics was to get people screened for sickle cell disease and trait. It is 2024, some 50 years later, and still, this isn’t being talked about nearly enough. I know they are beginning to make some strides with gene therapy it seems…but a cure that is readily available and affordable for all is probably still some ways away.
So what is sickle cell disease? According to the NIH, “Sickle cell disease is a group of inherited red blood cell disorders that affect hemoglobin, the protein that carries oxygen through the body. Normally, red blood cells are disc-shaped and flexible enough to move easily through the blood vessels. In sickle cell disease, red blood cells become crescent- or “sickle”-shaped due to a genetic mutation. These sickled red blood cells do not bend or move easily and can block blood flow to the rest of the body.
The blocked blood flow through the body can lead to serious problems, including stroke, eye problems, infections, and episodes of pain called pain crises.”
The condition affects more than 100,000 people in the United States and 20 million people worldwide. According to the CDC, “more than 90% are non-Hispanic Black or African American, and an estimated 3%–9% are Hispanic or Latino.” Pause and let that sink in for a moment. More than 90% of us!
“About 1 in 13 Black or African American babies are born with sickle cell trait.
About 1 in every 365 Black or African American babies are born with sickle cell disease.
The estimated life expectancy of those with SCD in the United States is more than 20 years shorter than the average expected.”
Those are pretty chilling statistics to me. Like any disease, there is a spectrum of how well one can do while having it, but no one is exempt from the pain.
So with all that being said… The purpose of this post. I don’t know what to do to “fix it” as he asked. And I am sure I don’t have the power to do much, though I will continue to research and figure out a more satisfying answer to that question for myself. But for now…
I am doing a bake sale for Juneteenth in honor of Israel and for World Sickle Cell Day. The proceeds from the bake sale will be donated to Health Equity Matters Foundation in his name, as was requested by the family at his funeral.
I would be honored if you all would support this initiative by buying cupcakes or just making a donation if you don’t want the actual cupcakes.
Better yet, if you want to take it a step further, I charge everyone to go get tested to see if they are sickle cell carriers and know their status. Make sure your children know theirs also.
If you are able to, donate blood!
I don’t want to say that he lost his fight to sickle cell. He fought well and was awarded the rest he so desperately needed. But his fight is over. However I am personally making sure that his charge to “do something” did not fall on deaf ears. This is my little version of “something.” And if nothing else, every Juneteenth y’all will hear from me a post about Sickle Cell Awareness Day, even if that’s all I can do. Posting additional links in the comments for those who want to know more.
Rest well Israel.
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