Your Health is Your Choice with Sara Troy and her guest Mikki Gaffen Stone, on air from August 29th

I would like to shed some light on the topic of often invisible chronic pain conditions such as hypermobile type Ehler’s-Danlos Syndrome. It is said to be a rare condition, but I call bullspit on that. It is rarely diagnosed and that is another thing altogether.

Ehlers-Danlos Syndrome (EDS) is a hereditary condition that affects the skin and the mobility of joints due to abnormal collagen synthesis, an important component of connective tissue; the latter is abundant in the skin, joints and vessels, to which it gives strength and elasticity. Although it develops in childhood, the diagnosis is only reached in later years. The condition takes many different forms that vary in severity, so the clinical manifestations vary widely. Ehlers- Danlos syndrome diagnosis is based on physical examination, through observation of how the patient moves, and the doctor’s analysis of his/her medical history. Usually, a rheumatologist or a physiotherapist establishes the diagnosis rather than a general medical practitioner.

Ehler’s Danlos Syndrome brings with it many, many challenges. One of those challenges is that people with this condition often ‘look well’. This can lead to some unpleasant public scenes where someone tries to shame a person with EDS for using mobility aids for example. The judgment and lack of support can, and all too often does, extend all the way to medical gaslighting.

Born in England, I am a lifelong learner and nomad. Having lived in eight countries to date, I consider myself to be a Global citizen – where I come from is a story, not a place. Home is wherever I am, right now. And we are moving soon I work with people. Meeting them where they are and guiding them to exactly where they want to be. We make big changes and small ones. Whatever is needed. I do so while working with my own chronic condition of Eheler’s – Danlos Syndrome, hypermobile type. I believe my own experience with pain enables me to understand others on a level that you only ‘get’ if you experience it yourself.

More on the difference between fibromyalgia and E.D.S, HERE

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