Research Updates III

I’d love to see more research on specific treatment options and their efficacy because while it is important to draw these connections, it’s one thing for us to say it’s important to assess for EDS/HSD and fibromyalgia—that’s a big step forward, but once we do so and possibly confirm these diagnoses, what can we as patients, caregivers and advocates do about it? Unfortunately, a lot of times it feels like we walk away with few actionable or accessible recommendations. But some of this is my frustration with access to treatment once one has climbed mountains just to get these diagnoses. I want to be able to *do something* to make my life better.

For example, I’d love to hear specifically about what types of PT are most effective for HSD/EDS. Research seems to agree physical activity helps most of us, not there’s not as much agreement on how to do it. We’ve made strides in what not to do and what’s unsafe, but what to do instead, beyond the conventional wisdom of “joint stabilization”?

I’d also be really interested to learn more about HSD/EDS and the crossover with mental health concerns and medical trauma.

Thank you for all you do.

For anyone following this blog who may be interested in other areas of research, I recently came across The Fascia Institute, affiliated with Tulane University. They also have an EDS Clinic and have some really interesting research updates and resources on their blog for those of us with HSD or EDS.

Similar to this, I like that they say they actively try to share what they’re learning from their patient population and research and they try to focus on sharing information so other providers or people who can’t get to their clinic may be able to take some actionable knowledge away too: https://fasciainstitute.org/news/

EDS Clinic: https://hypermobilityclinic.org/eds-blog/

They’ve recently written about how they’ve observed delayed onset muscle soreness tends to last longer in hypermobile individuals and a possible connection between methylation (of B vitamins) problems and hypermobility. It’s been really helpful and from that my PCP and I ended up finding that I have one of the variants that might cause challenges with methylation.

This is an outstanding reference to a clinic and blog from Tulane University that appears to have some great, actionable advice about living with EDS and navigating everything from nutrition, to fitness, physical therapy, supplements and special care with surgery and anesthesia. Thanks very much!

I’m glad you thought so too :-). I was so intrigued I wanted to share it with someone other than my doctor lol.

They don’t seem to update as often but it looks like they have a Facebook page as well.

This was the article that initially drew me in. Research is very early, but really intriguing: https://fasciainstitute.org/folate-deficient-hypermobility-syndrome/#

All the best to you.

Excellent-thanks again. And the Ehlers Danlos Society continues to be another good reference site:
https://www.ehlers-danlos.com/
Take care!

I would like to understand why, all my life, I can't do strenuous exercise without having to stop because I feel that I am suffocating. I had to stop in the middle of a strenuous dance routine and sit down because of this condition. I was the only girl in my athletics class that got an E for running the 400 yard dash. I would start feeling as if I couldn't get any oxygen into my lungs. I felt I was suffocating. I have been seen by a Pulmonologist. I do not have exercise- induced asthma. No doctor can give me any diagnosis. This is life- long. At five I would have to stop jump roping, because I couldn't seem to get oxygen in my lungs.

A stellar site for evidence based information!