EDS Education and Empowerment Endeavors,

🦓     Inc.    🦓

About The Founder_________

I struggled for over 35 years before getting an EDS diagnosis, and by that time I had had recommendations for 14 different surgeries on many different joints. It is known that EDS patients often do not have favorable surgical outcomes. I have been beta testing regenerative treatments on myself, as well as trying different forms of physical therapy. It is frustrating that we are often offered irreversible surgeries that may worsen our symptoms, and that we end up with a different doctor for each joint, so that our wholistic picture of health is not seen in a comprehensive way. I want to be able to share my experiences with Prolotherapy and PRP restoring my mobility, and I am interested in what stem cells may have to offer in the future. I also want to share some specific physical therapy that helped me in my progress from being recliner bound to mobile. I am constantly reviewing research related to the problems that I experience, and would like to share this with the world so that doctors, patients, and media are aware of the difficulties faced by EDS patients in getting targeted and comprehensive treatments. I also want to compile more information on the many co-morbidities that accompany this disorder.

Ehlers-Danlos Syndrome Education and Empowerment Endeavors, Inc.

We are a non-profit organization committed to educating EDS patients on alternatives to invasive orthopedic surgeries.

What is Ehlers Danlos Syndrome?

Likely you are familiar with this syndrome to have ended up on this site.  I will put a link (🔗) to The Ehlers-Danlos Society website where they discuss exactly what EDS is, and the different types as they are currently classified.  In short, it is a group of inherited connective tissue disorders that cause issues with collagen production and structure.  This affects all types of connective tissues, including cartilage, bones, blood, fat, and fascia, and can affect muscles, skin, joints, tendons and ligaments, and blood vessels.

(🔗) EDS Types

(🔗) EDS Diagnostics

(🔗) Assessing Joint Hypermobility (Beighton Scoring) 

While EDS is a multi-systemic disorder, this website focuses on the musculoskeletal aspects of this disorder.

At this time, 13 types of EDS have been identified, and the most common type, hypermobility type, has not had a genetic marker(s) identified.  Many doctors will not diagnose EDS, so it is important to find a doctor who will.  Most often this is a geneticist, and if they run the tests and you are negative, you can still have hypermobility type based on flexibility tests and your personal and/or family history.  Getting diagnosed is important to validate your issues, know what to look out for, and how to better care for your body as you go through life.

Why might an EDS patient want to consider alternatives to surgery?

Common complications with EDS and surgery include excessive bleeding, wound healing problems, blood vessel tears, and concerns with anesthesia and other medications. More severe subtypes of EDS, including vascular conditions with fragile blood vessels, can be associated with higher rates of complications.  (🔗)  

EDS patients have an increased risk of poor surgical outcomes and complications compared to the general population.  (🔗)

There is also the issue of the number of joints affected. I was not diagnosed until my late 40s, and by then I had recommendations to have surgery on 14 different joints. I would be an invalid recovering for the rest of my life!  And sadly, I once went to a high end clinic that was associated with a university.  I asked about EDS and connective tissue disorders.  I had to choose a joint, so I chose a knee doctor since that was my most recent injury (as we get a different doctor for each joint). I told him all my issues and he wrote, “I don’t think she has a connective tissue disorder. I just think she is prone to injury.”  Never did he check any flexibility of any joint. It wasn’t until my collarbone separated from my sternum several years later that I finally went to the geneticist who gave me an official diagnosis for what I had struggled with my entire life.

What options and alternative are there to surgery?

This will never be an exhaustible list since new forms of treatment are always being discovered. I will share information on regenerative injectable treatments such as prolotherapy, PRP, and stem cells, as well as selected physical therapy and supplements. As I come upon more options, I will add them as I go.

Funny how most of us feel invalidated by most everyone until we become such an invalid that it is undeniable. Okay… maybe not funny, but the irony of those terms being spelled the same came to me as I was typing the previous paragraph.

                    Interesting that being an 

                            invalid (in·va·lid1)    ˈin-və-ləd 

                            one who is sickly or disabled 

                                    (which I was when I was “recliner-ridden”- and by definition I still am since I am disabled)

                   is the same spelling as something that is not valid, or 

                            invalid (in·val·id2)     in-ˈva-ləd 

                            being without foundation or force in fact, truth, or law

                            logically inconsequent

                   Funny how most of us feel invalidated by most everyone until we become such an invalid that it is undeniable.  Okay… maybe not  funny, but the irony of those terms being spelled the same came to me as was typing the previous paragraph.

                            Remember… just because you are disabled (and I am), it does not mean you are not valid… you are valid and you matter!

Interesting that being an 

invalid (in·va·lid1)    ˈin-və-ləd 

 one who is sickly or disabled 

(which I was when I was “recliner-ridden”- and by definition I still am since I am disabled)

is the same spelling as something that is not valid, or 

invalid (in·val·id2)     in-ˈva-ləd 

being without foundation or force in fact, truth, or law

logically inconsequent

Funny how most of us feel invalidated by most everyone until we become such an invalid that it is undeniable.  Okay… maybe not funny, but the irony of those terms being spelled the same came to me as was typing the previous paragraph.

Remember… just because you are disabled (and I am), it does not mean you are not valid… you are valid and you matter!

Patient Testimonies
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Regenerative & Alternative Treatments

Alternatives that may delay or prevent the need for surgery.

Patient Testimonies

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Adding interesting content as I come across it!

Research Links

A smattering of different topics that I have researched due to my own needs. Will add more as I read more!

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Our Mission ______

Our mission is to educate, empower, and advocate for individuals with EDS by providing comprehensive educational resources, sharing personal experiences, and promoting research into new and emerging treatments. We strive to facilitate access to regenerative therapies, such as prolotherapy, PRP, and stem cells to enhance mobility, quality of life, and foster a supportive community.
To create a world of awareness and understanding for individuals with Ehlers Danlos Syndrome (EDS), where they have access to knowledge, support, and emerging regenerative treatments. We envision a society that recognizes the unique challenges of EDS and embraces innovative approaches beyond the confines of the medical industrial complex, fostering hope and improved outcomes for those affected.
Education, Empowerment, Research into Regenerative therapies

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