My career switch from psychologist to open-science advocate

"In 2019, Jenna Keindel came across a research paper that would change her life. The Canadian, then aged 37, found it through a Facebook group of people affected by limb-girdle muscular dystrophy (LGMD), a condition that causes progressive muscle weakness. Keindel was diagnosed with it when she was 16. The paper suggested that another condition, called anti-HMGCR myopathy, a rare autoimmune disease that causes severe muscle weakness, shared some symptoms with specific subtypes of LGMD and was sometimes misdiagnosed as LGMD."

""Doctors and specialists can't possibly read every article that's being published," she says. "So, as a patient with a rare disease, you kind of have to also be a catalyst and a helper for finding those resources." Six weeks later, her physician confirmed that Keindel did, in fact, have anti-HMGCR myopathy, not LGMD. Since receiving treatment to fit the new diagnosis, Keindel's muscle deterioration has slowed considerably. She married in 2023 and now lives and works in Shawville, a small rural community"

Jenna Keindel, diagnosed with limb-girdle muscular dystrophy at 16, discovered a research paper in 2019 through a Facebook group for people affected by LGMD. The paper noted that anti-HMGCR myopathy can mimic certain LGMD subtypes and be misdiagnosed. Keindel prompted clinicians to test for anti-HMGCR myopathy and received a confirmed diagnosis six weeks later. Treatment for the new diagnosis slowed her muscle deterioration. Keindel married in 2023 and lives in Shawville, Canada. Kelly Cobey directs the Metaresearch and Open Science Program at the University of Ottawa Heart Institute and promotes open-science practices and awareness of predatory journals, earning the John Maddox Prize.

Read at Nature