Health Activist Roundtable on Ankylosing Spondylitis:
On April 27th, I had the pleasure of participating in a Rountable discussion with two fellow advocates from the Ankylosing Spondylitis community. It was a great having the opportunity to discuss the myths that are associated with this disease, while providing accurate information, in an effort to dispel some of these myths. We also discussed the needs of the community and what we offer individually through our blogs & other social media platforms that we each use. Some of the tidbits from the discussion are posted on the WEGO Health Blog and I’ve re-blogged their post here:
“May 5th marks World Ankylosing Spondylitis (AS) Day, and in order to spread awareness, WEGO Health recently held a Health Activist Roundtable with several leaders of the online AS community. In line with WEGO Health’s mission to set the record straight this month, AS Health Activists debunked myths and misconceptions and shared their hopes for increased awareness both amongst AS’ers and in the medical community at large”
What AS Health Activists want YOU to know
- Awareness is the number one priority of the AS community. Many people suffer from this disease and yet no one knows about it. Patients often know more than their doctors, who often lump AS in with RA.
“I think people need to be clear about the precise symptoms that go along with AS and how it’s different from chronic fatigue syndrome and fibromyalgia. Mental health and living with chronic illness is also an important topic that should be covered.”
- For those living with AS, your rheumatologist might not have all the answers. Because AS shares symptoms with CFS and fibromyalgia, an internal medicine doctor may have better tools to deal with those symptoms.
- Complementary therapies, including regular exercise and dietary changes, can HELP to naturally manage AS, but everyone responds to these interventions differently.
“The difference that I have run into is people not understanding the difference between autoimmune arthritis and degenerative arthritis. AS doesn’t just affect the joints, but also the internal organs. The eyes, heart, lungs, liver, stomach can also be affected by the disease. We need to talk about this outside the pain that we’re experiencing on a daily basis.”
Myths and Misconceptions about Ankylosing Spondylitis
Myth: Ankylosing Spondylitis (AS) is the same as Rheumatoid Arthritis.
Fact: AS shares many symptoms with RA, as well as Chronic Fatigue Syndrome and Fibromyalgia. AS differs in several ways, primarily in that it can result in “fusion” of the spine.
Myth: AS is a rare disease.
Fact: “This disease isn’t rare but the disease isn’t well known. 33 million people around the world have spondylitis but it’s very isolating, I’ve never met anyone with it. The majority of the time we know even more about the disease than the doctor does.” – Kelly (@Hope4AS)
Myth: AS is a man’s disease.
Fact: AS does not discriminate by age or gender. Women are often misdiagnosed or underdiagnosed.
Thanks so much to all the Health Activists that participated, we hope that this Roundtable will help you to spread AS awareness and can’t wait to hear about all of your efforts today for World AS Day! We hope you’re wearing blue today!