Wow! How? Community Consults

“Lana,” a woman I interviewed who asked that her real name not be used, lives with mitochondrial disease and is an active member of a private Facebook group of people who share her diagnosis. Some of the members have become experts in drug interactions particular to “mito” and offer guidance to others based on their hard-won personal experience.

For example, when Lana was facing surgery, she received the following advice from a Facebook friend:

“Insist on talking with the anesthesiologist before they take you back. Response depends on the specific biochemical defect. Any risk of FOD or complex1 deficiency and propofol should be avoided. Avoid muscle relaxants if possible. If given, take MH precautions unless you have done OK with succinylcholine in the past. Narcotics are usually OK and can help decrease use of sedatives… Of course we are all different and there are exceptions…good luck!”

When Lana met with the anesthesiologist assigned to her case, he admitted that the only thing he knew about mitochondrial disease is what he had read on PubMed in the few minutes before their appointment. He was grateful for this expert consult from a teenager with no medical training beyond the years she has spent in treatment.

Lana’s story illustrates how people can be bold and creative in seeking advice, yet cautious when applying it to their medical care. Trained professionals guide her treatment, but thanks to her peer community, Lana is able to ask questions and share information to spur those clinicians to provide the best care possible.

Lana is an example of both a Seeker and a Networker, two of the archetypes I describe in my upcoming book, Rebel Health, which will be released by The MIT Press on Feb. 13, 2024. Seekers go on the hunt for information, not stopping until they find what they need. Networkers pool resources and learn in community, sharing what they know for the benefit of other people like themselves.

Jack Saul, Ph.D., a psychotherapist whose expertise includes community-led healing, beautifully captures the goals of my book: “Rebel Health is a wonderful testament and practical guide to the way people can come together and tap into their collective resilience to address health challenges. Susannah Fox writes with great wisdom and depth about how the different actors (Seekers, Networkers, Solvers, and Champions) work together to promote innovative patient-led solutions to previously unrecognized health needs.”