Uncovering the underlying mechanisms for hypermobility

Hey everyone,

Today I wanted to share a fascinating piece of research I just read about. It comes from researchers at Tulane University, who are working to discover the underlying causes of Ehlers-Danlos Syndrome.

As you may know from reading my blog, Ehlers-Danlos Syndrome is one form of a genetic hypermobility condition. Based on my experience (both personal and coaching my clients) I believe that genetic hypermobility conditions are a predisposing factor to why many people develop SI joint dysfunction.

Basically, if you’re genetically hypermobile, it means that your body produces connective tissue – which makes up many aspects of our body, including ligaments – that is more “stretchy” and fragile than the average person’s. In the case of SI joint dysfunction, this can mean that the joints which hold the joint together are more easily sprained, leaning to chronic joint instability.

In my own life, I’ve gotten really far from learning about this condition and how to manage it. Now, I know it played a big role in my SI joint dysfunction, and when I incorporated strategies that factored this in, I was able to become a million times more stable.

That said, I *do* believe that knowledge is power. The more we know about what’s going on, the better we can start to understand how hypermobility relates to the overall picture of our genetics and health.

Hypermobile Ehlers-Danlos Syndrome is *one* form of genetic hypermobilty condition, but not the only one. Hypermobility conditions run on a spectrum — some of the genes responsible have been identified, while others have not. (Personally, I have been diagnosed as genetically hypermobile by two geneticists, yet told I don’t fit the criteria for Ehlers-Danlos). However, uncovering these mechanisms may hold relevance to explaining all forms of hypermobility, so I’m really excited to share it today!

I found out about this research thanks to this group at EDS Awareness, who have interviewed the researchers at the EDS Clinic at Tulane University.

These researchers found that in at least a subset of patients with hEDS, a genetic variation in the methylenetetrahydrofolate reductase gene (or MTHFR for short) is present. Essentially, this genetic variation was found to affect the patients’ ability to metabolize folate, aka vitamin B9.

The researchers conducted an experiment where they gave their EDS patients a food supplement to replace some of the enzymes their faulty MTHFR genes were not making. This supplement would then give them the ability to properly metabolize the folate in their diets.

And lo and behold, this supplement ended up improving the pain and other symptoms in a full 50% of the patients who tried it!!!

So, while this mechanism may not explain all of the symptoms people experience in hypermobile EDS, it does appear to play a role in a significant percentage!

I am so excited to see this research. Because, as much as I’ve been able to overcome many boundaries and become a lot more functional in strategizing ways to navigate the world as a hypermobile person… it would be amazing to also be able to intervene in a biochemical level, to repair the processes that may be dysfunctional in how we create connective tissue.

This research may be just one step at the beginning of a long road, however it is incredibly significant for proving that hypermobility disorders are in fact real conditions with a biochemical basis. This opens up the door for further research to shed light on these “invisible” disorders, bringing us forward into a world where conditions like hypermobility and EDS are taken much more seriously.

Anyway, this was kind of a longer post, but I just wanted to let you all know that I am so excited about this research!

For more on how I navigated hypermobility in my own journey, check out my Hypermobility section!

And be sure to check out this post and interview from EDS Awareness.

Stay tuned for more!