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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?
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I have had lifelong connective tissue disease and weakness with nothing diagnosed...at age 53 I'm finally piecing things together from heart issues, nerve malfunction, endocrine/hormonal imbalances, early age osteoporosis, tarlov cyst disease and joint problems...can you direct me on where to do or who to see for research into if i have some HSD genetic component? My quality of life has been poor since age 35 onward, and hitting menopause age severely increased all pain and disease states.
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2 Reactions@tkdesign, be sure to let your specialist(s) know that you are interested in clinical studies. They will know what trials are available in their area of specialty that may be right for you.
Here is a list of EDS related studies at Mayo Clinic https://www.mayo.edu/research/clinical-trials/search-results?keyword=Ehlers-Danlos%20syndrome
You can also contact Mayo Clinic Research to discuss possible studies:
Non-cancer clinical studies questions
Phone: 800-664-4542 (toll-free)
Contact form https://www.mayo.edu/research/forms/clinical-trials
Get diagnosed by geneticist via Beighton test. See rheumatologist. Find best pain mgt doctor and PT therapist. Listen to podcast Bendy Bodies. Buy book Disjointed. Use Jill Miller therapy balls for relief. Wish you well!