Spondylitis Resources

Ankylosing Spondylitis (An-kee-low-sing Spon-dih-ly-tuss) is a disease that causes inflammation throughout the body, especially in the spine and low back, and can cause bone spurs to fuse joints together, typically in the spine. Additionally, since AS is systemic it can also damage organs including the eyes, liver, lungs, and more.

Other important facts:

Ankylosing Spondylitis is not rare. Over 2.7 million people in the USA are diagnosed with a form of Spondyloarthritis. That’s more than the number of people diagnosed with Lou Gherig’s (ALS) and Multiple Sclerosis (MS) combined.

Ankylosing Spondylitis is not proven to be an autoimmune disease. Many researchers are currently calling it an immune-mediated inflammatory disease until more is discovered.

Here are two helpful sources that explain autoimmune, autoinflammatory, and where AS might or might not fit:

  1. This article by a rheumatologist explaining the differences between autoimmune and autoinflammatory. This was written in 2016; some information has since changed regarding AS classification.
  2. This explanation of how AS works and why it isn’t autoimmune by Dr. John Reveille, beginning at minute 32:24 of this video webinar.

For more information about AS and Spondyloarthritis, I recommend the Spondylitis Association of America. This link will take you to an overview of spondyloarthritis, the umbrella disease category under which Ankylosing Spondylitis falls: Spondyloarthritis: A Family of Related Diseases


The following are several organizations around the world that do work related directly to Spondyloarthritis/Ankylosing Spondylitis education, research, advocacy, awareness, and more. I have found a majority of these organizations and their links through the Ankylosing Spondylitis International Federation website. I have only included organizations that have active links (as of 11/26/2017). If you know of an organization I could add, please comment below.

If you are looking to connect with others who have AS or related diseases, visit my Spondylitis Community page.


Country/Region specific organizations:

Australia/Queensland

Australia/Victoria

Austria

Belgium/Flanders

Belgium/Wallonia

Bulgaria

Canada

Canada – French version

China

Croatia

Cyprus

Czechia

Denmark

France

Germany

Hungary/Budapest

India

Iran

Ireland

Italy

Japan

Lithuania

Moldavia

Netherlands

Norway

Portugal

Russia 

Singapore

Slovenia

South Korea

Spain

Sweden

Switzerland

Taiwan

Turkey

Ukraine/Solotonosha

United Kingdom

United States of America


Internationally-focused organizations:

Ankylosing Spondylitis International Federation (ASIF)

International Foundation for Autoimmune & Auto-inflammatory Arthritis (IFAA)


Rheumatological professionals research organizations/annual conferences:

American College of Rheumatology (ACR)

European League Against Rheumatism (EULAR)

 

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