Debra C
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Debra C. experienced numbness in her face, toes, and wrist and was eventually diagnosed with multiple sclerosis when she was 41. She was motivated to participate in a clinical trial for her MS so that she could “help other people that come after me.” The first trial she participated in involved participants ingesting a parasite. For Debra, “drink[ing] the worms” “was like, OK, that’s no big deal.” The trial involved lots of MRIs, blood tests, vision tests, and walking tests. On one of the MRIs Debra got for the study, the providers saw two brain aneurysms on both sides of her brain; Debra later had two brain surgeries for this issue that was discovered during but unrelated to the clinical trial. Partway through the trial, the person leading the trial told Debra he “was about to pull” her out because he didn’t see she was receiving any benefit from the trial. He decided to let her continue and at the end of the trial told Debra she “actually did the best out of anybody in the study” with good results on the tests she completed at the end of the trial. Debra “was like, well, can I have some more worms then?” but was not eligible to participate in the next phase of the trial because she had been in the first phase. Debra also has experience participating in a diet trial that she found she qualified for when looking for studies online. She “got the Wahls diet” she wanted and felt that her MS symptoms improved while she was on that diet.
Clinical trials give Debra C. a sense of purpose.
Clinical trials give Debra C. a sense of purpose.
And like I said, if I can help somebody else, you know, I mean when I was a counselor and I– and I could help somebody, then I felt like I felt like I had a purpose in doing what I was doing. You know, and then of course all that's taken away from me, because I can't work now. So with this, again, it's where—I'm doing what I can to help people that come after me, because, you know because I've been at this a while. So that gives me a sense of purpose. It's like, at least I didn't just sit back and have MS. I sat back, had MS, but I at least helped, maybe, develop something new or maybe some other treatment platform or, or something, I helped for something. You know, and that's important for me, is to stand for something.
Debra C. talks about being given a study ID number.
Debra C. talks about being given a study ID number.
But anyway, you know, the consent, I always had to sign consent forms you know, saying that I was willing be in it and have my information shared within the trial with other people that you know, were all working within the trial and any other entities that they were doing this study with. So-
How did you feel about sharing your data in that way?
You know I mean, I was, I mean, all of those or most of those, you're always given like—the first one I did, the HINT trial, I was given number three, which that was actually my favorite number. So, I was like, oh, that's cool. And then the one, the diet one, you were given a number again, some number, like six-digit number or something like that. And I’m just, you know, -So it didn't really matter, because it’s like you know, you know, I mean your identity is like whatever. You know you're just a number or you're just a name. So- …. Yeah – yeah it doesn't bother me to share that.