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“What might they be interested in learning from me?” Tips on medical advocacy

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from a patient with Marfan syndrome.

Being an advocate to the medical community is an important way to raise awareness of your condition.

Many people throughout the years have asked me why I became an advocate, and my answer is found in what was a perfect storm of several factors. One large one was losing my ability to work in the executive career that I had made major advancements in. This loss, coupled with having to navigate the social security disability system and the back-and-forth with my private disability insurance company, made my overall health (both physical and mental) much worse. It's one thing to have to suffer with one's health (or lack thereof) but to have to fight for benefits that you've earned and payments from a private insurance policy that you've paid decades for, while dealing with the many financial challenges that accompany the incredibly difficult decision to stop working make for a very lonely and aggravating time.

By going through rough times, I learned what works and what to avoid - and I made a promise to myself that I would help others through the process. I want to be a source of support and let patients know that they're not alone and that there are better days ahead. Not only am I helping others advocate for themselves but also by doing so, I help myself. It's a good feeling to help another person; it's my medicine for dealing with my day-to-day health challenges.

It can be daunting, however, to do advocacy work and to reach out to the medical community, whether it be a hospital, a medical school, a local health fair, a private medical practice or your own doctor/health-care provider’s offices. In the last 15 years of working on various forms of medical advocacy, I've found through trial and error some useful steps in obtaining the best results in each area of the medical community and all health-related entities.

There are several suggestions you can make to a hospital representative regarding medical advocacy. You could ask for an awareness table at the hospital, to be manned by knowledgeable support staff, on your condition; suggest that you provide literature to various departments on the condition that pertains to their particular specialty; or inquire about the opportunity to tell your personal story and answering questions from individual departments/staffs at the hospital.

One way to improve your chances of gaining an opportunity for advocacy is to ask your own doctors to help, especially if they're affiliated with a local medical school or have good contacts at the hospital and/or medical school you would like to advocate to. They may teach or present at affiliated hospitals and medical schools and/or know doctors who do or key administration representatives to talk to.

It's important to keep in mind, also, that your message is a powerful and important one when it comes from your own or a close loved one's experience with the condition that you're advocating for. Having a condition, knowing all the facets of its symptoms and the key factors that most doctors and medical students may not know should be an integral part of your message in advocating for your condition.

No matter what type of medical advocacy you want to start first, take time to consider what message best fits the individual or organization you're interested in contacting. It’s always a good idea to step back and think, ‘What might they be interested in learning from me about my condition that they could utilize to help future patients with my condition?'

Armed with factual information and the power of your own story is key to improving not only the awareness of your condition in the medical community but hopefully the quality of care for all those with your condition who walk through their doors in the future.

Jonathan Rodis has Marfan syndrome. He is president of the Massachusetts Chapter of the Marfan Foundation, and chair of the Physician Awareness Committee for Marfan and Ehlers-Danlos syndromes. Rodis is presenting at the Ehlers-Danlos National Foundation Learning Conference, which begins Thursday, Aug. 13 in Baltimore.

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