Pamela

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Sick Cells interviewed Pamela, a sickle cell disease advocate whose work is driven by personal experience. After her son was diagnosed with sickle cell disease in infancy and later passed away at age 47 due to related complications, Pamela turned her lived experience into advocacy. She is committed to raising awareness, encouraging families to stay informed about evolving treatments such as stem cell transplantation, and emphasizing the importance of support and education for individuals living with sickle cell disease and their caregivers.

Can you tell me more about your story in terms of being an advocate for sickle cell disease?

My son was actually diagnosed with sickle cell disease at the age of three months. From that time, we were consistently in and out of the hematologist’s office, having all of his blood levels and things tested. As he got older, he began to go to the hospital a lot more frequently, experiencing pain crises. And eventually he began to have more and more blood transfusions. He even had, I’m not sure what the terminology is for it, but it’s like with dialysis, how they take your blood out and put it back in.

He passed away at the age of 47 [because] his organs started failing. So when he passed away, he was actually on support for his kidneys. So I actually ended up having to make the decision to take him off of life support.

When I first learned that he had it and I did research, the research said that the average lifespan for a Black male was 35. I don’t know if that’s changed or not, but if it hasn’t, I’m like, well, he made it to 47. So he outlived. But yeah, he did start getting really, really bad. We researched the types of food that could help. We didn’t live in the same town, so it was kind of hard for me to be on him and monitor and make sure he ate properly. But that’s why I became an advocate because it did hit me personally.

What would you say kept you going? did you have a support system during that time?How important was your support system during this time?

He lived in Decatur, Illinois, there was a young lady he had been dating. She stepped in to be his mother and I couldn’t be there, so she was always there for him and I love her for that to this day. So I just want everybody to be more aware. And before he passed, I had actually set up an appointment with him at the University of Illinois Adult Sickle Cell Clinic. But being as stubborn as he was, he was talking about, “I can’t get there.” So he didn’t make it here for that. But I just want to bring more awareness to it and hopefully that more young people or people in general that have it will be able to take advantage of the sickle cell transplant. Yeah. So that’s my reason, for us to stay motivated.

What would your advice be to other sickle cell warriors or advocates, caregivers, or people who have children with sickle cell disease?

Well, as a parent with a child that has sickle cell disease, do your research, stay on it to see if there’s things that can kind of help them. Because people do live long lives with it, but do your research. Make sure you know [what] things that have changed. Read up on the stem cell transplant. If you can do it, try to participate in it. As a warrior, well, just try to be encouraging to the person that has it, because I know it’s got to be kind of hard on them, but just try to be encouraging to them, be there for them when they have their pain crisis and stuff like that.

Is there any part of your story that you wish people knew when they first look at you or get to know you?

That I’m real. I’m real, my pain is real. Like I said, listen to us, understand us. And I wish that the doctors and the nurses and the pharmacy, we all work together to make this a better… You know? Educate better about sickle cell.

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