By Stanford Erickson
Two women were, for me, like celebratory bookends to The Myositis Association’s International Annual Patient Conference in Baltimore September 6-8, 2024. One was the opening Friday night keynote speaker, Jessica Buchanan, who, together with a coworker, was held captive for 93 days by ransom-seeking Somali pirates. The second was Saturday night’s Heroes in the Fight Award recipient supermodel Karen Alexander, who for eight years has been held captive to dermatomyositis.
Both of these extraordinary women embodied what TMA’s Executive Director Paula Eichenbrenner identified as the life coping lessons for those who live with myositis: survival and resilience.
“I think the number one rule my colleague and I made at the beginning of this ordeal was we could feel any emotion—fear, anger, rage—but despair was not an option,” Jessica said. “Because we knew once we got to that point there was no turning back. I think anybody who finds themselves in some sort of situation such as this, where complete control is taken away from you on the outside, you struggle to find some sort of control on the inside.”
Jessica and her colleague were ultimately rescued by US Navy Seal Team 6. She now has dedicated herself to sharing her story with others who experience difficult life-changing events. Her message: Do not give in to despair. Be resilient.
In accepting her award, trailblazing supermodel Karen Alexander said the diagnosis of dermatomyositis totally changed her life forever. She also explained that family and friends helped her to use the emotional and physical turmoil she has been going through to be an advocate for others and herself in bringing greater awareness to the public about myositis. “This is not the life we wanted,” she said. “But it is a life in which we can thrive with the help of each other who live with this currently incurable disease.”
With my wife Nancy Marx Erickson, who was diagnosis with inclusion body myositis ten years ago, I have attended a few of these Myositis Association International Annual Patient Conferences. All have been useful and informative, especially for a caregiver who is attempting to be useful to someone who wants to keep their independence while being dependent. I found that the Baltimore conference allowed the individuals who live with these diseases to be the focus, the experts who can provide the truly accurate information. As a couple of women with myositis said in meetings, “We often know more than the physicians treating us because the disease is so rare.”
In the closing session on Sunday, Dr. Victoria Shanmugam, Director of the National Institution Health’s Office of Autoimmune Disease Research, pointed out that only seven to eight percent of the entire population of the United States are afflicted with autoimmune diseases, and 80 percent of those are women.
Given those facts, I thought my wife Nancy Marx Erickson said it best in introducing Jessica Buchanan when she said, “A principal self-educational reason for each of us to be active, supportive participants in the Myositis Association is to help one another to demonstrate strong resilience in the middle of a life-changing event and identify our autonomy and choices within our daily myositis journey.”
Up to 50 million people in the U.S. live with an autoimmune disease, according to the National Institutes of Health. This is approximately 15% of the population of the USA.
However, and this is an important consideration, how many of these people have MULTIPLE autoimmune diseases and are being counted multiple times? I personally have been diagnosed with 27 different diseases.