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My Life Shows Why We Need More Awareness About Ehlers-Danlos Syndrome

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Those of us living with Ehlers Danlos syndrome (EDS) frequently experience the reality that friends, family, and more importantly, the medical professionals trained to diagnose and treat us, often seem 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 reality and these uninformed 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 going on with us.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Ehlers-Danlos syndrome 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 trying to make up for the ineffective ligaments and tendons. I did not get accurately diagnosed until the age of 54 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 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 many people with EDS.
Quickly, I realized my new mission in life would have to be to educate others in hopes to ease the hardships facing others born with this condition. If one person could benefit from anything I could do, I would feel fulfilled. I would like to share what I decided to do to try to raise awareness of the reality of our real condition that is often 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 an attempt to make the new medical students at least familiar with the symptoms. I also tried to make the students aware of ehlers danlos syndrome and how many of us are sent home being told we have fibromyalgia. I am not an expert, 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 joints 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.
  • I learned to search for doctors who understand Ehlers-Danlos syndrome. 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.
  • I have also found that there are many wonderful caring doctors that are not that aware of Ehlers-Danlos syndrome but are willing to work with us to figure out how to help us. So, finding the right personality match is important, for the particular doctor’s attitude may prove as critical as their 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 have tried many different treatments. As long as I have the confidence that they will not hurt me, I take the chance that they might help. When I experience success, I 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 in-service with the ER staff at our local hospital on how to safely care for patients with Ehlers-Danlos syndrome.
  • Consider marking your car about EDS, for awareness, and see what responses or questions you might get.
  • Consider setting up an Ehlers-Danlos syndrome awareness support group — not to sit around and share misfortune, but to help spread information forward. Consider bringing 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. 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 Ehlers-Danlos syndrome awareness for your state. The request gets sent to your governor’s office and the Ehlers Danlos Syndrome Society has a template you can use.

I hope that your journey with this condition will eventually become something you learn to live with and still be able to find happiness in your life. I know what a difficult journey Ehlers-Danlos syndrome can be, but remember this is your only life to live. Despite the chaos Ehlers-Danlos syndrome can bring into your life, you can find peace and direction.

Getty image by Ayzenstayn.

Originally published: April 26, 2022
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