Dani
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A few years after moving to a new city and starting her dream job, Dani’s coworkers started noticing that she was slurring and explaining concepts in a circular way. Dani also started to notice frequent headaches and increased clumsiness. Through an MRI and lumbar puncture, Dani was diagnosed with MS at 24 years old. Upon hearing her diagnosis, she remembers breaking down and feeling that she was probably going to die. Dani’s first and only clinical trial experience involved observations of her walking abilities over time. As part of the trial, the researchers would ask Dani to “walk around the office” and observe her gait, how she walked, and if she “dragged” her foot. The researchers also asked questions regarding Dani’s cognitive ability. Following changes in her personal life, Dani chose to leave the clinical trial. General speaking, Dani has had success with the drugs she is taking and hasn’t had interest in other trials, but “maybe give me some more years, or give me some more symptoms, and I'll change my tune.”
Dani talks about research as a way for people with chronic illness to be visible in society.
Dani talks about research as a way for people with chronic illness to be visible in society.
It's so important, and I wish there were more opportunities for people with all sorts of disorders, diseases, whatever, to share. So that it was more—people could realize how normal it is to have something wrong with you. And we could move past it and make more—make room for us in society. Because we do have things to offer still. It's just, we might need a little extra something to help us get there. And those haven't been priority for a bit, figuring out how to bring us into the able world.
Dani might consider a trial later, but had too many concerns to join when asked.
Dani might consider a trial later, but had too many concerns to join when asked.
Have you ever been offered a drug trial or had any interest in a drug trial? No? Why not?
I know, and I'm thankful for everyone who does it. And I do remember a couple of years ago worrying that if Tysabri stopped working for me, at that time there weren't a ton more. So, I was like would I have to go do one of those-- I called it an experiment in my head just now. And maybe that's the problem.
It's legit.
Yeah, yeah, and I'm just like, I have really bad luck. And I'd be the one to get the drug that turns you into a lizard. And I know that's ridiculous and dumb, but I really do. I really have random bad luck. So, I mean, maybe give me some more years, or give me some more symptoms, and I'll change my tune. But I just have not really had the calling.
But I think so if you were, it would be more of a last resort? Or because other things weren't working?
Yeah. Which is awful I'm realizing. But I'm just not-- I already have other comorbidities or whatever they call them. And I'm just, I can't-- I can't handle one more thing. I can't do it…
Unless that they can tell me that it's 50%--no, maybe 80% clear my MS, like, I won't have it. Other than that, I'm like, no. I've got my drugs that I use and so far, so good. I would hate to have a relapse and lose more of something, more of my brain, whatever happens up there. Especially if it's a placebo.
Dani talks about not trusting trials because of how Black people have historically been treated in medical research.
Dani talks about not trusting trials because of how Black people have historically been treated in medical research.
Why is being on a drug study not interesting to you?
Well, I mean, so my mom made me read lots of Black books growing up. And I have to say, I think that plays a part of this like, they gave us some not fun drugs, Black people, in the old days. So, I mean, not that anyone would sabotage and give me weird drugs and then not tell me I had syphilis and not treat me. But I guess I'm not that trusting and I'm just like, I already have this dumb disease. Please just give me the best medications that's already been proven. I can't-- I mean, I guess if was dying I'd take an experimental drug, but we're not there yet.
Dani says she didn’t read all of the consent forms.
Dani says she didn’t read all of the consent forms.
A lot of forms. And I mean, of them, but I knew it wasn't a drug trial. And then I figured they weren't going to do anything to me, so I just kind of signed. And I guess I probably should read more, should have read more. I also remember her going through some of the forms with me. And if I can remember, it reminds me--you in The Peanuts, the parents are like. That's what it feels like she was saying. And I remember just being like, OK, look smart, [NAME] and smile and it's great. So, I don't know. That's sad and awful, but I don't read it. I didn't read it all.
Dani urges people to join trials.
Dani urges people to join trials.
Hopefully to tell people like me, like old me, like years ago me, that don't stop. Do the trial. Help out. Don't let anyone take away what you want to do, what you feel you need to do. Whether it's a trial for a drug that you think might help you, or this kind of trial of sharing.
Dani hopes diverse people will have more opportunities to be in trials.
Dani hopes diverse people will have more opportunities to be in trials.
It's so important, and I wish there were more opportunities for people with all sorts of disorders, diseases, whatever, to share. So that it was more—people could realize how normal it is to have something wrong with you. And we could move past it and make more—make room for us in society. Because we do have things to offer still. It's just, we might need a little extra something to help us get there.