Makenzie
Outline: Makenzie was diagnosed with relapse-remitting MS in middle school. She has participated in research studies but declined to participate in a clinical trial.
Background: Makenzie, age 25, lives in a very rural area with her husband, husky dog, and three cats. She works as a medical scribe and has a graduate degree in public health. Makenzie identifies as a White heterosexual woman.
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Makenzie was diagnosed with MS when she was 13 years old, after she started experiencing double vision. During her childhood, they “used a lot” of her MRIs for research but Makenzie was never in any trials. She “was offered” the opportunity to participate in trials “for a few of the newer pills” but she “didn’t feel comfortable.” Makenzie had concerns about trying something new and having her MS progress, so decided against it. She has “a lot of lesions” on her brain and it made her “nervous” to try a new drug she wasn’t sure “would work.” Makenzie finds other ways to participate in research, by sharing her story and experiences, because “you can’t have pediatric research without patients.”