Advocating for Ehlers-Danlos

Advocating for Ehlers-Danlos

By Ellen Lenox Smith.

Those of  US  living with Ehlers-Danlos Syndrome (EDS) frequently experience friends, family; but more importantly, the medical professionals trained to diagnose and treat us, often seeming to be at a loss as to what our condition entails. Many of us have so frequently been told we “look fine” and there is nothing to do to help us. As we all know, that is far from the reality and these uniformed doctors do us a great disservice by failing to assist us in seeking the help we need. These medical professionals also can undermine our self esteem by inferring that they question whether there is, in fact, anything wrong with us.

EDS is a congenital connective tissue defect that affects the collagen of the body. Collagen is the body’s natural glue as it holds us together. Therefore, ligaments and tendons are defective and unable to properly do their job. Thus, muscles are on overload, having to do their job along with that of trying to make up for the ineffective ligaments and tendons.

Ellen Lenox Smith

I did not get accurately diagnosed until the age of fifty-four, with a condition one is born with. Following my diagnosis, I remember being so excited that I now had the answer to my problems. I was full of confidence that with my diagnosis, I could work with the medical professionals to develop a plan to address both my symptoms and the underlying causes of my condition. I had myself convinced that I would improve but instead I felt like I was slapped in the face as I came to to realize how little was known about this condition. Thus, finding a medical team to guide me was not a reality. I had to educate and build my own support. I would have given anything to have a helping hand reaching out to guide me, but that is not the reality for those suffering from EDS.

Quickly, I realized my new mission in life would have to be to educate others in hopes to ease the burden of hardship for the others born with this condition. If one person could benefit by anything I could do, I would feel fulfilled.

I would like to share what I decided to do to try to raise awareness to as to the reality of our real condition that is debilitating and also so heartbreaking when one is not able to feel validated that this really exists, let alone get the direction and help needed in a timely manner!

  • Living in Rhode Island, I worked my way into being part of the Brown Medical school curriculum in attempt to make the new medical students at least familiar with the symptoms. I also tried to make the students aware of EDS and how many of us are sent home being told we have fibromyalgia. I am not an expert trying to teach about the condition but instead I am putting the condition in their mind in hopes they will consider this diagnosis when their patient is still not feeling better and their bones are subluxing or even dislocating with no obvious physical cause.
  • One of our four sons helped us set up a website in an attempt to help educate and share the knowledge we have gained with others. We have found it so helpful, especially with a newly diagnosed patient, to be able to begin to educate relative to securing knowledgeable and understanding professional assistance. Here is the site we set up: https://ellenandstuartsmith.squarespace.com/
  • I learned to search for doctors who understood the condition. I  had to accept the reality of the need, at times, for extensive travel to find the necessary and safe help. We created an active list of doctors that are learning about, validating or even already educating patients about the condition. We have that list on our site but here is the link to it: https://static1.squarespace.com/static/535fa446e4b0eea56c06f79b/t/5bb4e5a51905f4207c2256d3/1538581926748/_RYAN+-+10%252F17+latest+EDS+doctors+for+patients+%281%29.pdf. Feel free to contact me if you have doctors to add to this list at: ellen@uspainfoundation.org.
  • I have also found that there are many wonderful caring doctors that are not that aware of this condition, but are willing to work with us to figure out how to help us. So, finding that right personality match is important for the particular doctors attitude may prove as critical as his expertise.
  • I have allowed myself to be a guinea pig. At the time I was diagnosed, there were few documented effective treatments for EDS. I would try many different treatments as long as I had the confidence that they would not hurt me. I would take the chance that they might help. When we experienced success, I would pass what we have discovered forward to others in hopes it might ease the next person’s journey.
  • I have learned to write – two books, letters to the editor, and many online articles to help educate others and pass information forward.
  • I have learned to offer to educate medical hospital staff- we have done an inservice for “How to care for us Safely” with the ER staff at our local hospital.
  • Consider marking your car about EDS, for awareness, and see what responses or questions you might get.
  • Consider setting up an awareness support group – not to sit around and share misfortune, but to help spread information forward. We bring in speakers to help educate others to improve the quality of their lives.
  • If I see any survey, research study, etc., I take the time to fill them in and offer to be a subject. At one time, before my parents passed, they even donated their blood and tissue sample for NIAMS research on this condition.
  • Consider taking articles about EDS with you to hand out at appointments with doctors to continue to educate
  • Consider running an awareness table at your local hospital, senior center, state house, etc – any place where people are gathering
  • Consider requesting a proclamation for EDS awareness for your state The request gets sent to your governor’s office and the EDS Society has the template you can use: www.ehlers-danlos.com

I hope that your journey with this condition will eventually become something you learn to live with and still be able to manage to find happiness in your life. I know what a difficult journey this is, but remember this is your only life to live so we have to find peace and direction despite the chaos it brings into your life.

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Authored by: Ellen Lenox Smith

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Ellen Lenox Smith

Margo and anyone with a doctor suggested, there is a contact spot on the top right of our website – feel free to contact us with names to add! https://ellenandstuartsmith.squarespace.com/contact-us/

Cindy

Wow, you are truly amazing!!

Diana

What a STUNNING website! So much really good information packed all together. It will take a while to get through all of this but thank you so much for this excellent resource! This is a site for anyone with chronic pain.

margo solod

how do you add to your list? i’ve found a couple of decent doctors here in the southeast.