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



The Bully

The Bully

James Magdaleno

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.

Mike Lindsay

Mike Lindsay

By Mike Lindsay

I was walking between classes in school one day when all of a sudden I felt extreme pain in my hip and couldn’t walk any further. I’d been very healthy up to this point, a school sprinter in fact. What I didn’t realise in that moment was my life was about to change permanently and a whole lot of pain was ahead.

Kristen Shields

Kristen Shields

By Kristen Shields

Hello, my name is Kristen and I’m 31.  I’ve debated for a long time about a sharing my story because I wondered how I was going to tell it? Who would relate? Would anyone benefit from hearing my story? I found the Spondylitis Association of America on Facebook and became inspired to share my story after reading so many others’.  

Candace Jackson

Candace Jackson

By Candace Jackson

The pain and stiffness of this disease, and the severity of my other conditions (I also have Ulcerative Colitis, fibromyalgia, and severe Gastroparesis) have prevented me from continuing to work in my dream vocation as a hospital chaplain

Yaakov Lewi

Yaakov Lewi

By Yaakov Lewi

My name is Yaakov Aharon Lewi which is Hebrew for Jacob Aaron Levi. I am 42 years of age. Not only does my name have a religious meaning but it's a family legacy going back thousands of years. I'm a native Texan, born in Waco. I am Jewish by faith and Hebrew by blood.

Kristin Cornelius

Kristin Cornelius

By Kristin Cornelius

Part of sharing my story is also admitting I don’t have it all figured out. Yeah, I love to be in control, but as anyone who fights this condition knows you don’t always have the last word. So I will fight, today, tomorrow, and every day.

Rose Bigham

Rose Bigham

Speaking at an FDA Public Meeting on Chronic Pain

By Rose Bigham

This week I flew out to Baltimore (from Seattle! Looong flight!) to attend a public meeting at FDA headquarters in Silver Spring. They held a public meeting to hear directly from chronic pain patients from all over the country about their symptoms, severity, barriers to care, and well – opioids and other alternatives for pain relief. There were about 250 people in attendance consisting of chronic pain patients, caregivers, advocates, some industry, researchers, and FDA staffers.

Kayla Slack

Kayla Slack

By Kayla Slack

I was first diagnosed with ankylosing spondylitis when I was 12 years old. I remember being outside at recess with terrible back pain that would have me almost in tears. I knew there was something wrong and I was right.

Don Markham

Don Markham

By Don Markham

Hello, my name is Don Markham and I was formally diagnosed with ankylosing spondylitis in 2014 after a major flare. Like a lot of us, I had never heard of ankylosing spondylitis (AS) before this diagnoses. I want to share my story and my victories against AS in hopes that others battling AS will find the drive to keep fighting, and to educate the general public.  

12

Stay Informed

Text/HTML

Careers

Visit our careers page for available positions

Contact Us

Spondylitis Association of America

16360 Roscoe Blvd.  Ste. 100
Van Nuys, CA 91406

Email

info@spondylitis.org

Information Requests

(800) 777-8189 U.S. only
or (818) 892-1616
*Please note: This is not a Crisis Hotline. If you are in a life-threatening crisis, please dial 911 for immediate help in the US. Please follow this link for crisis intervention resources.

Give With Confidence

Independent Charities of America