There is a saying that medical students learn: “When you hear hoofbeats, think horses not zebras.”
The maxim is meant to remind future physicians to always look first for common or expected diagnoses of their patients’ symptoms, rather than uncommon or “exotic” ones.
But to the zebras of the medical world—the 30 million people in the US who live with rare diseases—the saying is an important reminder of the ongoing need to raise awareness and ensure that rare diseases are not overlooked.
That’s why the zebra’s distinctive stripes have become the official symbol of the rare disease community, a community that includes the 50,000 to 75,000 Americans who are living with myositis, a rare and incurable disease.
Imagine experiencing debilitating pain that takes 10 years and countless specialists to accurately diagnose. Then, imagine telling your family physician your diagnosis, only to learn that he or she has never heard of it.
These are just two of the experiences individuals shared in the Living Proof Advocacy workshop we conducted recently for The Myositis Association (TMA) Annual Patient Conference.
Myositis is chronic inflammation of the muscles, often occurring with other symptoms. There is no cure and with inadequate or no treatment, the disease can cause significant disability and even death. Because many physicians are unfamiliar with the disease, it is often difficult to diagnose. And because myositis is rare, there is a lack of research; hence, new treatments are few and slow to be tested, and the medical community is often confused about how to effectively treat patients.
That’s the current situation that TMA advocates are working to disrupt with their stories and calls to action.
Advocating for education, research and support
The TMA Conference brought together more than 500 patients, care partners and physicians who attended nearly 90 educational sessions, including “Learning to Craft Your Advocacy Stories.”
Mary McGowan, executive director of The Myositis Association (https://www.myositis.org/), explains why it was important to include this session: “Effective personal stories shared by individuals living with myositis engage and affect listeners in compelling ways. Sharing stories about their myositis journey is the best way to raise awareness and one way patients and care partners can advocate and motivate change.”
Workshop participants discussed the key messages they wanted to convey, as well as the challenges of sharing their stories about living with myositis:
How do you share your experience and deliver key information succinctly, when you must first explain a disease that your listeners likely have never heard of (as opposed to when advocating for cancer support, for example)?
How do you balance your anger and frustration (at misdiagnoses or the lack of research) with a positive message of hope and action?
How do you stay motivated and committed to making a difference in the face of a progressive, incurable disease, one that TMA advocate Chris Dotur of Wasila, Alaska, describes as “a series of losses that never stops”?
The participants—drawing strength from being together—also shared the deep emotional resources they tap to spur their advocacy for education, research and support. As Chris also noted: “My story is a story of adaptation and triumph.”
Perhaps it’s no coincidence that the term for a collection of zebras is a “zeal.”
We are proud to be a part of the TMA support team and we look forward to witnessing the differences their advocates make for the myositis community.
ABOUT TMA AND MYOSITIS
The mission of The Myositis Association is to improve the lives of persons affected by myositis, fund innovative research and increase myositis awareness and advocacy. The aim of TMA’s programs and services is to provide information, support, advocacy, and research for those concerned about myositis.
To learn more about myositis, visit https://www.myositis.org/about-myositis/.