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
By Phil Donlay
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.
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.
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.
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.)
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.
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?
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.
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.
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.
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.
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’.
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
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.
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.
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.
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.
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.
By Jessica Moreland
I am 40 years old and I was diagnosed with Ankylosing Spondylitis in spring of 2017. My symptoms began with multiple attacks of Uveitis, an inflammation in the iris of the eye...
By Riley Newman
My symptoms began when I was 16 in the year of 2014. I would miss weeks of school because the pain was too much to handle. I was called names and a druggie because I was losing so much weight and it took a huge toll on me.
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