Your Stories

Each individual affected by spondylitis has their own unique story. We at SAA believe that each and every story can be a source of inspiration and empowerment. We’d love your story as well! Send it to us at Programs@spondylitis.org



Jim Weatherhead

Jim Weatherhead

Four Corners Ride for Hope: My Bucket-List Motorcycle Tour of Spondy Nation

By Jim Weatherhead

I love to ride motorcycles. Feeling my body in motion on any type of two-wheeled contraption is a deep-seated passion that started with the first tiny bicycle I got as a 5-year-old child. Riding is my alchemy of body and mind sensations that feed and nurture my spirit as I roll, lean, and sail through the world on two wheels. When I’m traveling on a motorcycle, it’s a place of calm retreat, intense awareness, and soul-healing energy that combine into a life-giving experience far greater than the sum of its parts.

Shannon Geld

Shannon Geld

By Shannon Geld

Learning to accept my body for what it is and how it behaves is how I survive daily life with ankylosing spondylitis. It is important for me to listen to my body. When it is feeling better, I enjoy taking a deep breath, walking at a normal pace and having a light spirit. When it is attacking me, I recognize that I need to slow things down and rest, and be okay with feeling upset, frustrated and angry. My body is not my friend and it has taken me over 15 years to fully accept that.

Curved Spine, Clear Heart: Dr. Muhammad Asim Khan’s Advice for Seeing the Glass Half-Full

Curved Spine, Clear Heart: Dr. Muhammad Asim Khan’s Advice for Seeing the Glass Half-Full

By Rachel Zaimont

It came down to a matter of taste for Muhammad Asim Khan, MD, FRCP, MACP – during his postgraduate training in London, England in the late 1960s, he recalled, “I didn’t like the hospital food that was served to me. One day I had a taste of Kentucky Fried Chicken and it was so delicious that I decided to go to the US, the origin of this franchise.”

Teresa Mussmann

Teresa Mussmann

By Teresa Mussmann

The first time I walked into a tae kwon do class, I walked in with my cane and my little dog. Master Evan Nixon, the owner of Mellennia Tae Kwon Do, thought I was just there to watch, which I kind of was. As someone living with spondyloarthritis, I never thought that I’d be able to do it.
Tom Neal

Tom Neal

Don't Fall!

By Tom Neal

By the year 2000 I was noticeably “bent over” in my upper thoracic and cervical spine. The local, well-regarded neurosurgeon said he could “straighten me up?”, but the mortality rate was approximately 50%. His last words to me as I left the office were, “Don’t fall, either forward or backward. Either way can break your neck.”

Michael Leach

Michael Leach

By Michael Leach

At the time I received my diagnosis, I was on the brink of my twentieth birthday. I was a healthy and fit young man, just starting my college basketball career, looking forward to a long life of adventures ahead. With two words, my rheumatologist flipped my world upside down.

Kathleen Barth

Kathleen Barth

By Kathleen Barth

Ankylosing Spondylitis What the heck is that? I can’t even say it. (Pronounced ank-kih-low-sing spon-dill-eye-tiss)

Roz Tolliver

Roz Tolliver

Cursed And Gifted With AS

By Roz Tolliver

Yay! I have a chronic, debilitating, painful, and incurable disease! My lifelong nightmare was over when I was diagnosed with Ankylosing Spondylitis and prescribed medication to help prevent, instead of just treat, my symptoms.
James Magdaleno

James Magdaleno

The Bully

By James Magdaleno

We all have a Bully in our lives, whether it be a physical person or in the form of pain or anguish, but we all have one. Since childhood my Bully has taken on many forms and I have overcome them one way or the other, but my current Bully is relentless and today I am going to share him with you. See, my Bully does not come in a form of a person but a condition. I have Spondyloarthritis.

Jessica Baird

Jessica Baird

Demons

By Jessica Baird

The long road to being diagnosed took a toll on my mental health, even though I have not been officially diagnosed with any mental health issues. The effects of being misdiagnosed and being told I have cancer at the young age of 28, left long lasting effects on me mentally, only to be told after that I have a degenerative disease.

The Anniversary

The Anniversary

The Philip Donlay Guest Column

By Phil Donlay

Brad Aspey

Brad Aspey

By Spondylitis Association of America

As I looked around the room watching the other beginner “Yogis” doing the relatively easy movements and positions that I was struggling so hard to do, I noticed a significant difference between myself and others who physically looked just like me before the start of the class. Ankylosing spondylitis is commonly called “an invisible disease,” but today this disease finally became very visible to me. 

The Platypus

The Platypus

The Phil Donlay Guest Column

By Phil Donlay

Ankylosing Spondylitis brings change, and most of it is bad, or really bad, depending on your point of view. I’m not describing physical pain, as we all know far too well what that’s all about. What I’m talking about is psychological injury - the kind that injures your spirit.

Are You Sure It’s Just A Flare?

Are You Sure It’s Just A Flare?

The Phil Donlay Guest Column

By Phil Donlay

One Friday evening, a day like any other, I fixed a salad for dinner, watched television, and then went to bed to read. I eventually switched off the light, rolled on my side and a sudden pain erupted in the left side of my chest.

Donnie Hogan

Donnie Hogan

By Donnie Hogan

Donald Ray Hogan, aka Donnie, is a fellow patient of ankylosing spondylitis. What most don't know is Donnie is Anna Nicole Smith’s younger brother (they are half siblings on their father’s side.)

Lydia Harris

Lydia Harris

By Lydia Harris

The first time I felt a flare up was after a softball game, in which I lost complete function of my right arm.

Theresa Silva

Theresa Silva

Managing AS in the Workplace

By Theresa Silva

I was finally diagnosed with Ankylosing Spondylitis in 2010 when I was in my late forties. By then, my back pain had become my constant companion, I had six cases of Iritis, and I was starting to experience joint pain in other areas of my body.  The diagnosis was a shock. I finally had an answer. But now what? How was this disease going to impact my life, and my career?

Reevu Neogi

Reevu Neogi

By Reevu Neogi

I remember the first time I experienced the effects of Spondylitis, it was the year of 2011 and I was 17 years old at the time.  I was at a sports event at my school, when suddenly I felt my legs go numb and I could not run anymore. I had to stop immediately and rush home.

Cindy

Cindy

By Cindy

All of your stories are inspirational in their own way. Here is an abbreviated version of my story. I hope that my story will help educate and inspire someone.

Carrie Kellenberger

Carrie Kellenberger

By Carrie Kellenberger

I never expected to lose my mobility, but that is what happened in July of 2014 when my body gave out on me and I could no longer move the way I used to. Year by year, I lost my energy to move and soon enough, I had an ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) diagnosis that severely limited my mobility and left me housebound.

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