We must emphasise that many patients around the world are misdiagnosed as having Fibromyalgia, and these patients should be routinely tested for Ehlers-Danlos Syndrome (EDS).
Some articles mention figures of 50-75% of mislabelling of these EDS patients. Furthermore, in Fibromyalgia, ultrastructural analysis of the dermis by transmission electron microscopy (TEM) is strictly normal (unlike in patients with Ehlers-Danlos syndrome).
Most patients with Ehlers-Danlos syndrome have been previously diagnosed with Fibromyalgia.
We need to make all doctors and carers in general aware of this reality.
The various treatments and aids proposed for Ehlers-Danlos syndrome(s) are specific and often different from those prescribed for Fibromyalgia.
The delay between the first signs and symptoms and the diagnosis of EDS is on average more than 15 to 20 years, worldwide.
This reality causes a great and intolerable suffering of these patients; we can only notice through the press and social networks that some people (and even artists around the world) are suffering and dying, without having had, perhaps, a diagnosis of EDS.
So let's test these patients for an EDS.....And not wait so long to do it!
Let us all continue to inform and train carers, but also friends and relatives, about this disabling and often "invisible" disease. It can lead to very serious disabilities.
Help us to help them!
Dr Stéphane DAENS & GERSED Belgium.
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