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Bringing autoimmune disease awareness to Bowling Green
by Linda Vanthournout
The American Autoimmune Related Diseases Association (AARDA) will host the very first Autoimmune Walk and Warriors Fun Run with the Relapsing Polychondritis Awareness and Support Foundation (RPASF) at Ephram White Park on July 8. I am excited to be supporting and coordinating this event! Come join me and enjoy a free “marketplace” of information and resources, a silent auction, face painting for the kids and live entertainment from local band Third Rate Soulmate. Dress up as your favorite “Warrior” for the Fun Run and you’ll join the fight to cure autoimmune diseases.
More than 50 million Americans suffer from autoimmune diseases. That’s one out of every five people in the United States! Researchers have identified 80 to 100 different autoimmune diseases and suspect at least 40 additional diseases of having an autoimmune basis. These diseases are chronic and can be life threatening. I’ll bet you know someone who has an autoimmune disease, such as rheumatoid arthritis, MS, lupus, vasculitis, Guillain-Barre syndrome, Hashimoto’s, scleroderma, sarcoidosis, Sjogren’s or celiac. Most have names you wouldn’t recognize, and that’s why building awareness is so important.
I am one of those 50 million Americans, as I was diagnosed with relapsing polychondritis (RP) in January 2015. RP is an uncommon disease that affects approximately three to five individuals per million people. RP affects both men and women.
I am a 49-year-old woman and mother of three amazing young men – Andrew, Matthew and Jacob. I have been a devoted wife to my husband Jim for more than 26 years. I was a healthy, active woman until I developed a cough that would not go away despite many treatments of antibiotics, inhalers and steroids. It wasn’t until I had a bronchoscopy at Vanderbilt that I found out the cause of this coughing.
Relapsing polychondritis is a rare autoimmune disease characterized by recurrent, widespread inflammation of cartilage and other connective tissues, such as the nose, ears, tracheal bronchial tree, eyes, joints, kidneys and heart.
The most common part of the body that gets affected with RP is the ear, but the disease affects multiple organs. Progressive disease can destroy the integrity of the airway and compromise breathing. Multiple joints can also be involved generating significant pain and swelling. Other organs affected include the skin, eyes, inner ear, aorta and heart valves.
Because RP is a “relapsing” condition, it can improve for a period of time and then worsen. There currently are no blood tests to diagnose it contributing to delay in diagnosis. Like all autoimmune diseases, RP has no cure.
In November of 2015, my son Matthew, my husband and I participated in AARDA’s first Los Angeles Autoimmune Walk. It was there that I helped create this opportunity for AARDA to host a walk in Bowling Green. Even though activities I love like running, spinning, gardening, and home projects have become difficult, I understand the kind of influence an event like this can have on awareness and support for the mission of AARDA and the Relapsing Polychondritis Awareness and Support Foundation.
“We applaud Linda Vanthournout for stepping up, courageously, to coordinate the Bowling Green Autoimmune Walk and Fun Run,” said AARDA Executive Director Virginia T. Ladd. “Raising awareness is an ongoing, nonstop effort that is bringing a national focus to autoimmunity as a category of disease and a major women’s health issue. It’s hard work, and she is making a difference.
“AARDA Autoimmune Walks have proven to be instrumental in raising funds for autoimmune research and extraordinarily helpful in linking patients, families, supporters and advocates together for a shared cause — we link together for a cure,” Ladd said. “The camaraderie and synergy that occur at our walks are just tremendous.”
Despite my limitations, I am focusing on doing my part to help spread awareness, raise funds, participate in research and support the autoimmune community. A portion of the funds raised through the Bowling Green Walk will go directly to the Relapsing Polychondritis Awareness and Support Foundation. On that account, will you lace up your walking or running shoes and join me on July 8 at Ephram White Park?
To register, donate or participate, visit www.AutoimmuneWalk.org, click on the drop-down menu and select Bowling Green.
For information on RP, visit www.rptherideofmylife.org and www.polychondritis.org/.
To learn more about AARDA, go to www.aarda.org.
