EDS Education and Empowerment Endeavors,
🦓 Inc. 🦓
About The Founder_________
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!