EDS Living and Education

Nov 5, 2021 | Samantha Campbell | @samanthacmaa | Comments (5)

Patients with EDS/HSD shoulder a burdensome workload living with a misunderstood condition. Typically, workloads include managing treatment plans, frequent appointments, maintaining a healthy lifestyle, and enacting self-care – in addition to usual daily roles. Education on aspects of EDS/HSD that help keep patients functioning is crucial to improve outcomes. As we know, living with and managing chronic illness is significantly dependent on the patient’s knowledge of the condition. If education is not sufficiently provided, or the workload is exceedingly taxing, this workload-capacity imbalance may negatively affect patient-centric outcomes including clinical, well-being, and quality of life.

For these reasons, we developed an education program, “EDS Living” conducted over one full day in a virtual group setting. It consists of EDS experts from various disciplines teaching multiple patients simultaneously, which in turn allows more time during face-to-face encounters for assessment at the individual level. Patients completing the education program are given the opportunity to provide feedback as we improve on the positive results of our program. Initial responses from patients have been uniformly positive. Conception of this education program derived from the volume of inbasket questions from patients as we recognized the amount of time needed to understand EDS was limited by the time available for scheduled visits. Thus, the program was launched on June 4, 2021 and has since improved the knowledge for many patients.

Until curative therapeutics are available, it is essential to create multidimensional, sustainable, and meaningful strategies for patients living with EDS/HSD. Because of this critical need, we built EDS Living to be tailored to the needs of patients as an integrated, embedded education program within the treatment resources of EDS at Mayo Clinic. As this is still new to our services at Mayo Clinic, we are mindful of the many patients who have yet to be enrolled. Please stay connected to listen out for the referral notification if this program is right for you. Some other excellent educational resources we also recommend include the Ehlers Danlos Society, the book Disjointed by Diana Jovin (editor), and of course this Blog! So, stay tuned for further updates.

Author: Dacre Knight, MD, MS

 

Interested in more newsfeed posts like this? Go to the Ehlers-Danlos Syndrome blog.

Hi! I’m new here! Excited to read and share helpful information in this community of warriors. I’m very happy to be here and I’ll do the best to understand the etiology of my HSD. Knowledge is power 📚☝🏻but power without compassion is nothing 🙏🏻🌼

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@lidiana

Hi! I’m new here! Excited to read and share helpful information in this community of warriors. I’m very happy to be here and I’ll do the best to understand the etiology of my HSD. Knowledge is power 📚☝🏻but power without compassion is nothing 🙏🏻🌼

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Welcome, @lidiana. Do you live with HSD?

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@colleenyoung

Welcome, @lidiana. Do you live with HSD?

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Thanks, @colleenyoung I was just diagnosed with HSD (not sure what type yet) still trying to navigate the etiology of it (kinda became research enthusiast). I’m waiting to join the EDS Living Program but I need to gather the requirements (OT,PT consultation from Mayo Clinic, I do have consultation and evaluations results from the local hospitals and Mederi tenders but I don’t know if this could be considered requirements by Mayo) and I’m in the process of qualifying for insurance. I’m trying my best to educate myself, collaborate and actively participate in my care plan. I’m happy to be here.

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Topic for uterus, menstruating person or woman: I have been dealing with some symptoms related to my reproductive organs all my life, I thought were normal but it has gotten out of control recently and this prompted me to investigate. Here is a picture of how the hormones in the cycle influences the connective tissue. This information it’s not mine it was taken from the website on the image. It’s important for us to understand our own body functions and conditions to make fully informed decisions that benefits or response to your health. I found diagrams and visuals very useful. Hope this helps visualize and understand this. Blessings and lots of healing 🙏🏻🌼

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@lidiana

Topic for uterus, menstruating person or woman: I have been dealing with some symptoms related to my reproductive organs all my life, I thought were normal but it has gotten out of control recently and this prompted me to investigate. Here is a picture of how the hormones in the cycle influences the connective tissue. This information it’s not mine it was taken from the website on the image. It’s important for us to understand our own body functions and conditions to make fully informed decisions that benefits or response to your health. I found diagrams and visuals very useful. Hope this helps visualize and understand this. Blessings and lots of healing 🙏🏻🌼

Jump to this post

In response to this blog topic suggestion, Dr. Taryn Smith, Mayo Clinic published this blog post:

– Hypermobility, Hormones, and the Menstrual Cycle https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/hypermobility-hormones-and-the-menstrual-cycle/

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