Connect
Authors: Dacre Knight, MD, MS; DeLisa Fairweather, PhD; Katelyn Bruno, PhD
In our last research update, we summarized our study on establishing our EDS Clinic. Today, we summarize our findings from a study about our group telemedicine treatment program, “EDS Living”.
Knight DRT, Bruno KA, Gehin JM, Lothman KA, Leschitz J, Lazo AL, Mejia L, Motherwell LS, Seymour-Sonnier AM, Dawson NL, Fairweather D (2022). The impact of a group telemedicine program for chronic disease: A retrospective cohort survey study on hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder. Telemed J E Health.
In this paper we describe the process of building a broad base of knowledge to allow more dedicated attention to the individual needs of our patients.
As you may know well, patients with hEDS/HSD often have a burdensome workload managing their comorbidities, coordinating care, and living with an often-misunderstood chronic condition. As a complex disease, quality of life for someone with hEDS/HSD depends on the personal knowledge of the medical condition. If education is not sufficiently provided and/or the workload is exceedingly taxing, this imbalance can be a detriment to quality of life. So, to meet this need, we created a treatment program that allows experts to meet multiple patients simultaneously and in a virtual setting—improving access to care. The results from post-program surveys show this program positively influenced the majority of patients' understanding of hEDS/HSD by providing hope and tools for improved self-management of this condition.
Our understanding about treatment methods continues to evolve, and further research will be helpful to learn what specific areas help patients the most. We are looking forward to providing you with more research as it becomes available.
Do you have any areas of research you are interested in learning more about?
Like
Helpful
Hug
Connect
Yes Ehlers-Danlos 6
It is so confusing have all the symptoms of HSD but none of
My doc or therapist say the words. I guess bc I’ve had so
Many other issues- shattered femoral head, TKR, and back issues. But now that nothing seems to help and with new groin pain and widespread dynamic pain I know this is what I have.
Is it important to get the label? Seems like my care would be positively affected with diagnosis.
I appreciated the Taichi/ Qigong. But it’s so disappointing that for over 16 years Ives probably only been exacerbating my issue with my PT and exercise program.
I would
Love to know what therapies my PT should be doing? All stabilization? And can you tighten any joints with prolotherapy -
SI joint? My possible contributor to my groin pain?
IDK a I just feel like I’m in kindergarten and need to know everything including how to educate my practitioners. Thx
-
Like -
Helpful -
Hug
2 ReactionsThere are many online resources giving examples of common exercises that help improve hypermobility. The keys are to go "low and slow" and improve the stabilizing muscles (core, glues, hips, rotator cuff, etc). Low impact exercises where you focus on quality of movement through a small or mid-range of motion are usually helpful. Pilates, either on the mat or with the Pilates reformer are helpful, pool exercises. tai chi, etc. Basically anything you like doing, doesn't cause a prolonged pain flare-up, and is gentle on the joints.
You can do a search for exercises for EDS or hypermobility, and many examples come up. If you're looking more to understand the underlying concepts, Jeannie di Bon's YouTube channel has a video series that can be helpful. I also like the Actively Autoimmune website (she is a physiotherapist with lupus, EDS and POTS); she's in Australia but offers online classes and exercise coaching that can provide a starting point. Stability Flow is something I read about here and look into. She used to have an ebook available with exercises that I thought was amazing, but I don't see it on her website anymore =(
I'm not sure if you noticed this post on the blog with some guidelines for exercise; I would say the recommendations are consistent with what my PTs and I settled on, especially in regards to how to handle pain: https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/exercise-for-heds-and-hsd/
It is frustrating to not have a "label" or diagnosis. Sometimes it can feel invalidating. But the unfortunate reality is it is very difficult to get a diagnosis because providers are limited. If you feel confident your medical team has ruled out the most serious and life-threatening conditions, it's okay to try to look at options for how you can improve your pain. If I had waited the 3 years and done nothing while I was going from provider to provider to get my inflammatory arthritis diagnosed, I might not have made as much progress as I've made. And oddly, HSD was the last of the diagnoses to fall into place.
One good thing is that many of the principles of physical therapy or comprehensive chronic pain management are the same or very similar, regardless of the condition.
-
Like -
Helpful -
Hug
4 ReactionsSplenic marginal zone non-Hodgkins lymphona - vaccination possibility ?
@vikitrees, you may wish to connect with other members living with splenic marginal zone lymphoma in the Blood Cancers & Disorders support group. See these 2 discussions:
- Does anyone have splenic marginal zone lymphoma?
https://connect.mayoclinic.org/discussion/does-anyone-have-aplenic-marginal-zone-lymphoma/
- Want to connect with others with Splenic B cell Marginal Zone Lymphoma
https://connect.mayoclinic.org/discussion/would-like-to-know-anybody-with-splenic-b-cell-marginal-zone-lymphoma/
Viki, what do you mean by “vaccination possibility”? Thanks, lila
Hi there, I was curious if Mayo were working on a vaccine to Treat Blood conditions like SMZL ? And if so, how they are going with this.
Hello. This is the only thing I could find in regards to a Mayo vaccine study:
https://www.mayo.edu/research/clinical-trials/cls-20521962
Please share if any more is found.
Thank you lila1 for taking the time to seek out info on the vaccine angle. There is some work going on here in Australia, and I was wondering how far Mayo had progressed with this. Hopefully, both places will ultimately find great success.
Thank you again, Viki
Hi Viki. A vaccine for lymphoma control or cure without serious side effects would answer many prayers. If anyone else has good news to this effect let’s hope they share it here. Lila