Happy Holidays From SAA


Our CEO, Cassie Shafer, would like to wish you a happy holiday season! From everyone here at SAA, thank you for your support and generosity over the last 35 years.

Watch Now!

Welcome to the Spondylitis Community

Tri-AS

Triathlon for Ankylosing Spondylitis

By Sallie Marx

Sunday, October 20, 2013

Tri-AS

For my senior project in High School, I am raising awareness for AS by doing a Half Ironman Triathlon on October 27th 2013 in Austin, Texas (1.2 mile swim, 56 mile bike, and 13.1 mile run). I have always been a high goal-setter, and I’m excited for the commitment that comes with this! Ultimately I would like to help find a cure for AS. But more importantly I want to inspire others to know that regardless of what they are faced with, they can get through it, and refuse to allow a label to confine or define them.

After nearly four years I was fortunate enough to find an answer and a correct diagnosis to my medical struggles. However, because AS typically takes many years to diagnose, some people may not be as lucky as I was. It is my hope that with more information and a better understanding of this disease, further suffering will not be prolonged.

Everyone in life is faced with hardships and infinite nuances that set them apart from their peers. Living on an island across from Seattle, WA, being a 1st Team All- State Varsity lacrosse captain and having a 4.0 unweighted GPA sets me apart from others. Eating kale, chia seeds and quinoa by choice (or being gluten-free, dairy-free and sugar-free) also isn’t very common for most 18-year olds. Yet long before my diagnosis on 11/11/11, the most profound thing that set me apart was living with Ankylosing Spondylitis.

As a dedicated three sport athlete, I was comfortable being uncomfortable: sore, bruised and exhausted from competition. But starting in 7th grade, I began to experience unexplained pain in my neck, lower back and gluteus muscles. I wanted to ignore it, but I had a subconscious knowledge that something was wrong and that no dosage of Advil could heal it. I went to over three hundred medical appointments trying to find a diagnosis, all while missing school and suffering with the reality that the activities I loved and lived for hurt too much to do. My life had turned into a clinical experiment with blood tests, PT, OT, Chinese herbs, neurofeedback, biofeedback, acupuncture, counseling, Strain/Counterstrain, deep tissue massage, hypnosis, Qigong and late nights at the hospital, to name a few.

I was extremely fortunate to have the means and the support of my parents and family to keep looking for answers. Countless doctors told me that chronic muscular pain was my own doing; that it was all in my head, and that if I changed my mindset it would go away. They were wrong. After multiple wrong diagnoses, on 11/11/11 at 11am (really), I was given a concrete diagnosis of Ankylosing Spondylitis. Life as I knew it was forever changed.

I am hopeful that in the coming future a heightened awareness of AS will lead to quicker diagnoses. My experiences fuel me forward and motivate me every day. Training for an Ironman 70.3 is a testament to the support I have gained along the way, and a testament to the fire within me that questions the limits of how far I can go.

This is what I am doing and working towards. I hope you’ll support me in my goal to raise $11,000 as I train to complete an Ironman 70.3! Proceeds directly benefit the SAA (Spondylitis Association of America) that helps put us on a path to find the cure.

Feel free to reach out to me with any questions or comments! Thank you for your support!

Print

Spondy What?


Spondyloarthritis affects more people than Amyotrophic Lateral Sclerosis (ALS), Multiple Sclerosis (MS), and Rheumatoid Arthritis, yet it remains relatively unknown.

ALS (30,000)
MS (400,000)
Rheumatoid Arthritis (1.3million)
Spondyloarthritis (2.7million)

infomap_text_new

Our Mission


To be a leader in the quest to cure ankylosing spondylitis and related diseases, and to empower those affected to live their lives to the fullest.




Could I Have
Spondylitis?

Think your pain may be caused by spondylitis? Watch our new awareness video and take the quiz!

Why Join the Community?

Connect with others because no one should have to face spondylitis alone.

Patient Resources
& Support

The most comprehensive library of spondylitis information and educational materials.

Learn About Spondylitis

Spondylitis is a relatively unknown disease, but it affects 1 in 100 Americans.

How Can I Help?

There are many ways to get involved in the community. Which one’s right for you?

Locate a Rheumatologist

Use our state-by-state list of patient recommended and board certified rheumatologists.

View the Directory

The electronic Spondylitis Update Newsletter


eSUN

Recent News

Latest Updates

Clinical Trial Opportunity for Adults with Ankylosing Spondylitis

Posted December 2018

A Phase 3 clinical trial is now recruiting patients over the age of 18 with active spondylitis (AS) to participate.

The purpose of the trial, titled, “Efficacy and Safety of Tofacitinib in Subjects with Active Ankylosing Spondylitis (AS)” is to determine if Tofacitinib is safe and effective in subjects with active ankylosing spondylitis

Read more…
More Articles ›

Video

This AS Life Live!

Posted March 2018

Learn More ›

Foods That Heal, Foods That Can Harm. An Interview With Clinical Nutritionist, Michelle Schirra

Posted November 2018

We sat down with Michelle Schirra, CN, MS to discuss how diet and nutrition can play a role in reducing pain, inflammation, and other spondyloarthritis symptoms. Michelle is part of an allopathic and functional medicine team at WellHealth Medical Center in West Hills, CA. Our thanks to Michelle for lending us her time and expertise.  

Read more…
More Issues ›

We offer a wide variety of resources for members of the spondylitis community, physicians and others who are interested in learning more about spondylitis.

Stay Informed

Careers

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