Julia
See full story
Julia was diagnosed with MS when she was 23. Due to mobility issues, she uses a Hemi Walker to move around and has been disabled for fifteen years. Through inquiring about clinical trials, Julia’s doctor connected her to ongoing clinical trials. Julia has participated in a long-term study where she had an MRI, Optical Coherence Tomography (OCT) scan, and blood tests done. She also participated in some movement studies that measured and timed her ability to walk a certain distance. Her latest clinical trial gave her a medication that would alter her intestines and supposedly affect her brain as well. After taking the pills, Julia had to submit stool samples, fill out questionnaires, undergo standard tests involving movement, and closely observe her diet. Julia asked the researcher if in the end, she took the placebo or the real drug, but they never responded. Julia looked up the results of the studies she was a part of because none of the studies communicated their findings to her. Julia remembers signing a lot of papers during the consent process, but she trusts her physician “completely” and does not dwell too much on those details.
Julia’s original motivation for participating in clinical trials “was to see if anything might help.” Eventually, her motivation evolved into the feeling that “even if it doesn't help, it's just a reason for being, right?” By participating in research, Julia feels like she found her mission in this world: to be “useful for someone who is researching this disease.”
Julia describes how her trust in her doctor makes her open to try a trial.
Julia describes how her trust in her doctor makes her open to try a trial.
One benefit for me right now is that unlike the first doctor that I saw here, I completely trust my doctor. So, if he tells me that it's safe to try, but if he said that it's not likely this it will do much difference, but he says it's safe try, and I should go ahead if I want to.
Julia describes how participation in clinical trials helped her find her mission.
Julia describes how participation in clinical trials helped her find her mission.
So, the first motivation of course, was to see if anything might help. But then the second motivation, especially at the beginning was that, well, even if it doesn't help, it's just a reason for being, right? So, yeah, I feel like I'm not really contributing in the other way, any meaningful way. So at least, that's how I found my mission in this world, is that maybe I'm useful for someone who's researching this disease.
Julia describes an observational study she participated in.
Julia describes an observational study she participated in.
And I don't even know if I could call it the trial or it's a long-term study where I have to take MRI and I have to submit blood. So, they take blood from me every time I go there. And then my eyes, the OCT scans. And there was—and again, I don't know what it is called, the study, something very complicated. But I remembered was that I had—and then some movement studies, so I have to come and see this physician. And it was very—she ended this study, but it was very obvious how I was getting worse with that. I had to walk a certain stretch of the floor in that case. First, I could walk without the cane. Then that was not even an option even if I had tried. So, I had the walk with the cane. But basically, then she would time me, and I would walk slow and slow. But that's one—I don't know if it's trial, but yeah, it was just for the purpose of studying. And yeah, but nothing that would really endanger me. And I forgot what else. Nothing major, I guess.