I had one doctor early on, up through maybe my teen-aged years. I was in this clinic. I’m out here and my parents are in there.
I had one doctor early on, up through maybe my teen-aged years. I was in this clinic. I’m out here and my parents are in there.
Like how is this going to happen? Now I’m 11 and probably 2 days from my birthday. It ain’t happened yet, so what’s going to happen? Just think of the mind of a kid. I’m like, ‘Well, what’s supposed to happen? Am I going to go to sleep and not wake up?’ I don’t know. After that episode passed then they said it again at 14, then they said it again at 18. By that time, I’m in college. I’m like, ‘forget y’all. Y’all don’t know what y’all talking about.’
I start preparing for an adult life, and a lot of people don’t. Or they can take the attitude of, ‘I’m not going to be here long, so I can do what I want to do.’
I’m not supposed to be here. I’m not supposed to do a lot of things. I went on to college, accounting degree, and had several careers at Fortune 500 companies. A lot of them don’t get a chance to do that and they live in that different lifestyle of nothing matters. I’ve been to all 50 states. Been around the world. I want to go to Dubai. But they tell you, ‘you can’t fly.’ I tell any sickle cell patient, ‘Try what you can and then pull back. But don’t let somebody else tell you ‘no’ before you try.’
I think what saddens me is that, particularly with this hospital, there’s 800 patients here. When we go to do advocacy or ask for money from the state for funding for the clinic, we’ve got 12 to 20 people. There’s 800 people here in the sickle cell clinic. Now, you know, maybe all of them can’t go but 20 out of 800? We need to speak up more for ourselves because if we don’t, who else will? I mean that’s just really sad to me. That’s why I’m out and about. I want to be an example of what you can do.
I try to be a mentor to my nieces and nephews. I’ve traveled a lot. Brazil, Europe, all 50 states. There’s nothing I can’t do because of my sickle cell.
“How can I say this and be nice? For Blacks, we don’t well with clinical trials because of Tuskegee. They lied and told us they was giving us one thing and was giving us something else. It gave a bunch of Black people syphilis and all kind of diseases and stuff. That’s gonna be a hard nut to crack because they deceived us once. Fool me once, it’s on me. No. Fool me once. Fool me twice, it’s on me.”
– Dennis, 61, SS
There is a cure, but everybody can’t afford it, and everybody ain’t medically ready for it, or everybody ain’t got the family structure to take it on. They got a stem cell, but you gotta have a medical match. A parent. Usually a parental match, but they’re going now to sister brother match. It’s still improving, but for it to be 100 year old disease, it’s kinda slow.