1. Health
You can opt-out at any time. Please refer to our privacy policy for contact information.
Anne Asher

How many people REALLY have Ankylosing Spondylitis?

By February 26, 2012

Follow me on:

Ankylosing spondylitis, a debilitating inflammatory back condition in which the spine may fuse over time, often shows up in younger people.  (Most arthritis is associated with the aging process.)

This means that people who experience AS, along with complications that may arise from it, do so for longer periods of time than other arthritis sufferers.  But does this raise the death rate in people with AS?  And if so, exactly what is responsible for the reduction in survival in those with ankylosing spondylitis?

A recent report published in the British Medical Journal entitled "Increased mortality in ankylosing spondylitis is related to disease activity" found that circulatory disease is the most frequent cause of death in persons with AS.  The study also identified other factors that may play a role, including parameters related to the intensity and duration of inflammation.

The authors of the study conclude "these results indicate that, to improve long-term survival in AS, there is a need for early detection and anti-inflammatory treatment as well as a vigilant approach for cardiovascular risk factors."  The authors call for more research on AS.

Measuring AS Prevalence

Estimates vary as to how many people in the US live with AS. A comprehensive epidemiological study on arthritis published in Arthritis & Rheumatism in 2008 found AS prevalence to range from .0003 and .009 in white and east Asian Americans. (The study authors reported that the data for African Americans suggest AS occurs less frequently for them.)

A recent study published by the American Journal of Medical Science (April 2011) estimated the prevalence of AS to be 0.2% to 0.5% in North America.

The researcher in that study noted several obstacles to determining AS prevalence, namely  genetic testing requirements, the transient nature of AS symptoms and ethnic heterogeneity in the sampled population.  The good news is the researcher projects these challenges may soon be eased, which may make accurately measuring the presence of AS in populations a more manageable accomplishment.

The Spondylitis Association of America reports that the unique sex- and age-specific onset patterns may provide insight into the way in which AS expresses itself.  The Association says that, clinically, AS occurs about 2-3 times more frequently in males than females, and this ratio increases when the disease is more severe.

AS - A Man's Disease?  Or Does It Equally Affect Both Genders?

Kelly Christal Johnston, an AS advocate who lives with the disease questions the status quo regarding how many people, and what type of people get AS.  "Although AS is believed to be a mans' disease, I believe that in actuality, it may be pretty evenly distributed among the sexes."   Johnston explains that for this and other reasons many cases of AS may go undetected, and that prevalence may be much higher than that which is typically reported in the medical literature.  She echos the  authors' call for more studies.  Research on the topic of ankylosing spondylitis is sorely needed, Johnston tells me.

But Michael Smith, another patient advocate with AS disagrees with Johnston.  "The facts say that while AS is not exclusively a man's disease, it is still one that primarily affects men.  This is a simple citation of the number of reported cases."

Several others (see the comments below this post) reason that in general women more than men tend to be open to sharing their feelings and talking about their health.  They say that this may explain why, in some situations, it may seem as though there are more women with AS than men.

AS - More Comprehensive Resources

Here are some more comprehensive sources for information about AS:

Related:

Sources:

Gunnstein, B., et. al. Increased mortality in ankylosing spondylitis is related to disease activity. Ann Rheum Dis doi:10.1136/ard.2011.151191.

Email Interview.  Michael Smith.  Feb 2012.

Facebook Interview. Johnston, Kelly Christal. Feb 2012.

Helmick, C. et. al. Estimates of the Prevalence of Arthritis and Other Rheumatic Conditions in the United States. Arthritis & Rheumatism. Jan. 2008. http://www.rheumatology.org/about/newsroom/prevalence/prevalence-one.pdf

Masi, A., Savage, L. Integrated Biomechanical Influences on Ankylosing Spondylitis. Spondylitis Association of America website. April 2009. http://www.spondylitis.org/research/pdf/biomechanical_ankylosing_spondylitis.pdf

Reveille JD. Epidemiology of spondyloarthritis in North America. Am J Med Sci. 2011 Apr;341(4):284-6.

Comments
February 26, 2012 at 10:29 pm
(1) cliff barabash says:

Weak! this sheds no real ight on what the disease really is,i trust my information from accual arthritis sites over what i have been seeing,i mean whos been doing the real research anyways

February 27, 2012 at 4:33 pm
(2) backandneck says:

As I have received a few similar comments and emails regarding this post, I’ve added some study based information and some more comprehensive information sources on the web.

February 27, 2012 at 2:19 pm
(3) Denise C says:

I would like to know what Kelly bases her belief that men and women are equal in this disease. If it is by the number of people who post on the AS site on FB, it should be taken into consideration that women are more open to talking about personal illness then men. Hard data needs to be provided to support that comment.

February 27, 2012 at 11:35 pm
(4) Chapps says:

I love the sweeping comment that she ‘believes’ that AS prevalence is split ‘pretty evenly’ between the sexes. There are quite a few advocates for this view, without the science to back it up. Here’s my personal take as a man – most men won’t talk about their health, and won’t go see a doctor until they’re lying in an ER. Women are typically better communicators, which is probably why AS forums on the web are about 90% women. So if anything, I wouldn’t be surprised if there were a huge amount of men who are currently undiagnosed. I’m sure some women are, too, but it really makes me angry that some folks want to turn this into a contest.

Let the science figure out the split. In the meantime, there are good methods for determining if someone has what I’ll call ‘classic AS’. There are also a lot of other people who don’t exactly fit the model, and may get shunted into the group known as Undifferentiated Seronegative Spondyloarthropathy. Seronegative, meaning they test negative for the RA factor. But it’s still clearly some form of spondyloarthritis.

I was first diagnosed with general arthritis (my hands) when I was 19, but I kept the symptoms in remission for many years by intense exercise. It still took many more years to get the AS diagnosis, even though the symptoms were very clear. Very few primary care doctors are trained to spot it – and not enough people are getting referred to rheumatologists for a diagnosis. I got diagnosed in my mid-40′s when I was all but crippled (but still training in the gym daily). I’m 51 now, and hope my spine will never fuse. Please do amend that one part of your article – fusion is not a certainty. The only certainty is a lot of pain and hard choices.

But please stop interviewing people who have magical beliefs without any basis in hard scientific fact.

March 1, 2012 at 11:22 am
(5) walker92 says:

Although few questions were answered I applaud the author for doing what few seem to write regarding AS; it increases mortality. I developed joint pain in my early twenties, a definitive AS diagnoses was made in my thirties. Despite a dedicated exercise routine, diet and aggressive treatment the often progressive nature of the disease has prevailed. I am now in my late fifties, disabled and still reasonably functional thanks to biological treatment and exercise regimens. That stated, I believe it’s time the medical community x-reference this disease for the destructive nature it carries, diminished quality of life and yes, increased mortality. Not pretty, but it allows patients to plan and embrace their lives rather than minimize the disease or it’s variable outcomes. If you have AS it is anything but a minimal process, unlike a lot of other disease states (cancer, heart disease, etc) it garners little empathy from medical professionals, friends and even family. The fact that it can increase mortality is a rarely mentioned fact, perhaps some AS patients will not bear this outcome, I do hope so… but for those that know AS and adjust to it everyday it is hard to imagine living a long life with such an insidious disease.

March 10, 2012 at 3:23 am
(6) Mary says:

UPDATE: According to the latest studies, the prevalence of AS is around 1% or more:

http://www.spondylitis.org/press/news/542.aspx

March 10, 2012 at 7:59 pm
(7) waiata says:

@Chapps – afraid I have 2 disagree with you and back Kelly. If you look at most of the research studies you will find that the majority of candidates are male in the studies. One cannot conclude that there are less women becos of this!

What it tells me is that researchers have not focussed on the different presentation of this disease between men and women.

If you look at http://WWW.facesofas.com you will see that for many women they have to fight to be taken seriously before a diagnosis is even discussed. For most of us we are classed as neurotic, drug seekers or our symptoms are put down to “women’s issues” such as pregnancy or menopause. For most women it takes between 10 & 20 years for the AS diagnosis – yet men tend to get their diagnosis in less than 5 years.

Frankly it is about time the medical profession started taking women’s health seriously!

March 21, 2012 at 3:09 pm
(8) Cookie says:

Everyone has brought up good and valid points concerning this, and we could go on for years debating this or the reasons for this and that. The thing that concerns me the most is people making this out to be a contest, it’s not a “contest” never will be, it is about diagnosing people correctly and quickly to get a jump on this disease so in the long run you are able to have a greater chance of having a life of better quality. I took a test that determines if I should be tested or checked out to see if I have Ankylosing Spondylitis and it was determined that I didn’t warrant being checked out for this disease. Although I have been diagnosed by several doctors and part of Dr. Revilles research. So I know that I have this disease, out of curiosity I did the test again and changed my gender to male and it was concluded that more than likely I have Ankylosing Spondylitis. The truth is this needs to be seen as an autoimmune disease that can equally affect men or women, young or old. Until that changes, it will never honestly matter what anyone’s opinion is or if men get it more or not. When the gender affects the out come of a test and directs someone in the wrong direction to end up spending years looking for a diagnosis and for treatment while irreversible damage is being done.. something needs to change.. and I think that should be the first place we start.. but all of this is based on my personal opinions and experiences. Thank you so much for sharing this information and allowing awareness about Ankylosing Spondylitis to be seen and discussed, as a person who suffered 32 years to find out what was wrong with me. I greatly appreciate it.

March 21, 2012 at 3:09 pm
(9) Cookie says:

Everyone has brought up good and valid points concerning this, and we could go on for years debating this or the reasons for this and that. The thing that concerns me the most is people making this out to be a contest, it’s not a “contest” never will be, it is about diagnosing people correctly and quickly to get a jump on this disease so in the long run you are able to have a greater chance of having a life of better quality. I took a test that determines if I should be tested or checked out to see if I have Ankylosing Spondylitis and it was determined that I didn’t warrant being checked out for this disease. Although I have been diagnosed by several doctors and part of Dr. Revilles research. So I know that I have this disease, out of curiosity I did the test again and changed my gender to male and it was concluded that more than likely I have Ankylosing Spondylitis. The truth is this needs to be seen as an autoimmune disease that can equally affect men or women, young or old. Until that changes, it will never honestly matter what anyone’s opinion is or if men get it more or not. When the gender affects the out come of a test and directs someone in the wrong direction to end up spending years looking for a diagnosis and for treatment while irreversible damage is being done.. something needs to change.. and I think that should be the first place we start.. but all of this is based on my personal opinions and experiences. Thank you so much for sharing this information and allowing awareness about Ankylosing Spondylitis to be seen and discussed, as a person who suffered 32 years to find out what was wrong with me. I greatly appreciate it.

Leave a Comment

Line and paragraph breaks are automatic. Some HTML allowed: <a href="" title="">, <b>, <i>, <strike>
  1. About.com
  2. Health
  3. Back & Neck Pain

©2014 About.com. All rights reserved.

We comply with the HONcode standard
for trustworthy health
information: verify here.