May is Ehlers-Danlos Syndrome Awareness Month. Ehlers-Danlos Syndrome, abbreviated to EDS, is a genetic disorder that affects 1 out of 5,000 people across the world. It’s also considered an “invisible illness” since it isn’t clear from the outside whether someone is living with EDS.
This article explains what Ehlers-Danlos Syndrome is, its symptoms, how to support someone living with EDS, and simple actions anyone can take to help.
Ehlers-Danlos Syndrome: What is it?
Ehlers-Danlos Syndrome is an inherited, genetic disorder caused by a defect in how the body produces collagen. Collagen is a protein that the body uses and depends on for producing connective tissue. It’s like the “glue” of the human body, keeping skin together and in proper form.
Hyper-mobility is one of the most common symptoms. “Double-jointed” is one way to describe hyper-mobility, but it’s not really the same thing. Moderate to severe chronic joint pain is reality those living with EDS. Depending on what classification of EDS someone has, there are a variety of chronic symptoms, ranging from frequent tearing of muscles to heart disease.
Ehlers-Danlos Syndrome isn’t easily visible from the outside. You can look at someone who has EDS and never realize they live with a disability. For these reasons, it’s known as an invisible illness. Invisible illnesses come with an extra challenge as the person with the disorder or disability physically looks fine, but may suffer from extraordinary amounts of pain or be fighting battles that an observer can’t see. For a moment, imagine you’re fighting the flu and obviously not feeling well. When you give an excuse for work or school, someone tells you, “Oh, just shake it off, how bad can it be?” Obviously, you’d think they’re crazy—you have the flu! You can hardly get out of bed! But what if this was the way things were, if you were told this whenever you were sick? This is a glimpse into what it’s like living with an invisible illness.
Today, not much is known about Ehlers-Danlos Syndrome. There isn’t much research on it and there is no known cure (although stem cell research seems the most promising solution). Those living with EDS usually use external support (e.g. wheelchairs, bracing, etc.) or different forms of therapy to help manage the illness.
Living with Ehlers-Danlos Syndrome
Those living with EDS face daily struggles that affect how they are able to live their life. There are countless testimonies online about what it’s like to live with Ehlers-Danlos Syndrome. Some days, the pain is crippling to the point where it is almost impossible to leave bed. You can read stories from those living with EDS at the following pages.
Supporting someone with EDS
If you know someone living with Ehlers-Danlos Syndrome, it’s difficult to know how to support them. Since not much is known, one of the most important steps you can take as a caretaker is to learn what you can about EDS and how your loved one is specifically affected by it.
Reaching out to online communities or searching for resources are some ways to help you develop your own personal “toolbox” for helping your loved one. The Ehlers-Danlos Society has information you can read about being a caretaker and how to help someone with EDS and yourself.
One of the most important things you can do is to develop your own listening skills and work on mutual, two-way communication. You need to develop patience as both you and your EDSer learn and experience life with EDS. Counseling on how to best communicate has proven a valuable resource for many. Be willing to accept your own feelings and emotions too. Your feelings are not invalidated as a caretaker either, and accepting this will help both you and your EDSer.
Above all, remember that your loved one is more than their illness. There’s more to life than Ehlers-Danlos Syndrome.
What you can do now about EDS
We all know information is valuable, and it’s never been easier to find in the twenty-first century. But imagine not being able to know, to not be able to Google an answer. For something like how to feel better or even how long you’ll live. Information and research is one of the key needs of the Ehlers-Danlos community around the world. The Ehlers-Danlos Society is a 501c3 non-profit organization that helps drive research and education initiatives, awareness campaigns, advocacy, community-building, and care for EDS patients.
You can consider making a direct donation. One of their most recent deliverables was the 2016 Ehlers-Danlos Society International Symposium, with the goals of updating the diagnostic criteria of EDS and developing standards of care that were missing in professional practice.
If not a direct donation, if you’re a heavy Amazon shopper, consider using AmazonSmile to have part of your Amazon costs donated to the Ehlers-Danlos Society. Amazon will donate 0.5% of the price of your eligible AmazonSmile purchases (side note, they’re listed by their previous name, “Ehlers-Danlos National Foundation” in AmazonSmile).
Zebra by m. turan ercan from the Noun Project
Dedicated to someone who helped teach me to see life from another perspective a long time ago.