not rare

Is Ankylosing Spondylitis rare?

I hear people call Ankylosing Spondylitis a rare disease all the time and this drives me nuts.  For sanity sake I’m going to talk about the numbers.  Let’s start by debunking this rare disease gibberish.  What is a rare disease?


In the United States, a rare disease is generally considered to be a disease that affects fewer than 200,000 people. Rare diseases are sometimes called orphan diseases.


Ankylosing Spondylitis affects 2.7 million.  So that is absolutely not rare yet so many still call it a rare condition.  We need more awareness! 



What is the deal with this gene?  What about my kids?


More and more I hear people speaking out about the HLA-B27 gene and attempting to diagnosis on it alone.  That is not how it works!  This gene does play a role but so do other things including many other genes.  There are millions out there with this gene that never develop Ankylosing Spondylitis.  I think the biggest reason it scares me when I hear people referring to the gene as a “test” confirming A.S. is when they are discussing it in regards to their children.  Please do not ever assume just because your child carries the gene and you have Ankylosing Spondylitis that this means your child will.  With or without the gene the fact that you have it does raise the risk for your child but only slightly.  So again let’s look at the numbers to put everyone’s mind at ease. 


Total Population in America 316,128,839 as of the latest Census report.

Total Spondy’s 2,700,000 which is 0.85% of the total population.


Total Population with HLA-B27 Gene

25,290,307 that is 8% of the total population.


Total Spondy Population with HLA-B27 Gene

2,565,000 that is 95% of the total Spondy population. 


That means only 10% of the 25,290,307 people with the HLA-B27 gene have Ankylosing Spondylitis. 


Spondylitis Association of America, SAA for short, says;

If a parent, brother or sister has spondylitis, and I test positive for HLA-B27, what are my chances of getting the disease?
If a family member had spondylitis and you test positive for the HLA-B27 gene, your chance of getting the disease increases to 20%, if you are under age 40. If you are over 40, your chance of developing spondylitis is very low. If you have AS, the likelihood of passing it on to your children is relatively low. There is approximately a 50% chance that the child of one HLA-B27+ parent will inherit the gene, but only a small percentage of those will develop AS.



What do all these numbers mean?

This is based off numbers that are changing as fast as I can write them down.  We thought for the longest time that children and woman could not get this disease.  Those numbers are climbing now that we know do in fact suffer the same.  We thought people without the gene marker could not get this disease and those numbers are climbing as well.  They are also discovering more genes that seem to be common within Spondy’s.  It is very exciting to see progress being made!


I share these numbers to note that we can’t put all of our hope into what we know today but into what we are learning everyday.  We can’t feel doom if our children or family member has this Gene…it’s not a diagnosis!  It is hope for the future and shows that there are those out there working to find answers to all our questions.  We will continue to hunt for a cure!   







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