I didn’t know what Sickle Cell Anemia or Sickle Cell Disease was until my best friend’s children were born. I remember them sharing the news that their children had been diagnosed with the disease — it was a somber moment. I still wasn’t sure what we were talking about. I only knew that it wasn’t what we wanted.
Sickle Cell Anemia is “a group of blood disorders typically inherited from a persons parents” (Wikipedia). The blood cells of a person with the disease are shaped, abnormally, like sickles which can hinder the flow of blood through the body. This can lead to an entire host of problems, such as pain crises.
Because the disease originated in sub saharan Africa and is an evolutionary trait to protect from malaria, in America, it is far more common to find Black people to have this disease than it is to find white people with it.
September is Sickle Cell Awareness Month. As much as I have learned watching my friends battle this disease, I find there is always something to learn about it. For a long time, it seemed as if those with the disease were struggling in silence, like they were hidden.
But now, those voices are growing and they are only getting louder. In honor of this month and all the warriors who are carrying this burden day in and day out, I thought it would only be right to highlight some of the voices doing the work and shedding light not only on the disease, but on the best ways to combat it.
Here are a few people and orgs to look out for:
Full disclaimer: This organization is run by my good friend, Shakeira Wesley. Since day 1, she has been determined to fight for her children. I have watched her make tough decisions as a mother and a caregiver. And then eventually, it bubbled over into We Eat 4 Life. It is an organization that is focused on bringing awareness to the powers of eating healthy and giving knowledge to families affected by Sickle Cell Anemia. Shakeira and her family are a walking testament to how effective We Eat 4 Life has been. Check them out!
Be The Match is an organization that is focused on, not just Sickle Cell, but a variety of blood diseases and disorders. They curate and manage a database of people who register with them to donate bone marrow or core blood that, if found to match someone in need, can then be used to transplant and then save their life. As I said before, they don’t only focus on Sickle Cell but they have a site dedicated to Sickle Cell patients and getting them the resources they need. That site is here. So definitely, check them out and consider joining the registry.
The cool thing about this organization is their focus on storytelling. They have some great educational information about the disease and how to manage it, but the real power is in the database of stories they have compiled. Real people with the disease, sitting down and sharing their experience with Sickle Cell. Talking numbers and stats is important but it’s also important to hear the personal stories. Check them out and watch their stories!
These are only a few of the people and organizations advocating and sharing the stories of the people, this disease, and actively sharing tips and ideas for how to beat it. I am proud to be in a relationship with a family who has handled the ups and downs with grace and perseverance. I hope you will take some time to look up some of these names and to see how you might be able to get involved.