BDO talked with chef & sickle cell patient, Misty Williams and Marissa Coers, a fourth-generation sickle cell patient, who is also a patient advocate with access advocacy out of Los Angeles, California.
BDO: Wow, fourth-generation sickle cell patient. How is life growing up with family members with sickle cell as well?
Marissa: Intricate. I will say. My mother’s eldest brother, my Uncle Teddy. Was born the same year sickle cell was considered a clinical illness. Where you are being treated in a hospital. My grandmother and great-grandmother said this is amazing. We can take them to the hospital people. By the time he was 30, he’d suffered from three strokes and the last one left him physically and mentally handicap. For the rest of his life.
My grandmother was his caretaker. And so when I came along. It was like. You will not. Be that way. This will not be you. So from that moment, I think I could smile not just talk with a smile. It was put into me [that] doctors are not always correct. You must speak up for yourself. You must tell people exactly what you’re feeling, how you’re feeling it (and when and why) and what you need.
It is exhausting but it is necessary. So you’re in a bubble of the generations after you. You know it’s like four-year-olds. You walk out the door. Auntie, Auntie. They’re trying to tell you to you’ll get a cold, but now you’re the elder. So now [they] don’t quite know how to talk to you but they know you are sick. So everyone is in a constant bubble around you trying to make sure that you’re OK. It’s complicated.
BDO: So speaking directly to patients who have family members with sickle cell as well, and are able to see older family members go through that, what can you tell that patient now? That person that’s reading this now. What would you say to encourage them?
Marissa: Every generation learns from the previous generation and the next generation is always hoping for that current one. So you have to be willing to open yourself up to them being protective over you and constantly teaching you the same lesson that they’ve learned over and over again because you will always pull something new from that story, from that lesson, and then apply it to your life and to your situation. Period. And continue to tell your story and continue to tell your doctors and nurses about you and the fact that you come from a line of people that have been dealing with this because they truly believe this disease was found out in the 60s and you know hey that’s it.
No, I tracked these back 110 years in my family and…