In these difficult and soon to be holiday periods, we are lowering the price of the kindle ebook of the book "taming Ehlers-Danlos syndrome" (S.Daens et al., 2022) to 29,50€ (instead of 37,50€), available
New nomination as Honorary President of GERSED Belgium: Dr Richard Amoretti, cardiologist, Paris, France
ISM Center Boulogne-Billancourt
Dr. Richard Amoretti is a sports cardiologist and sports physician, he practiced for 35 years in private practice and is a former director of teaching in sports cardiology at the Faculty of Medicine of the Pitié Salpêtrière in Paris. Dr. Amoretti has subsequently specialized in aeronautical medicine and Ehlers-Danlos syndrome.
He is also co-author of the book "Transforming Ehlers-Danlos Syndrome", S.Daens et al.
Laws and decrees on the development of education in Belgium.
Reasonable accommodation at school
Higher education and possible aid
"Transforming Ehlers-Danlos Syndrome": book's rectified index.
Epi Genetics and Eds (EDS society)
https://www.ehlers-danlos.com/
Nice testimony from a patient in the USA about the book Transforming Ehlers-Danlos Syndrome.
Fibromyalgia or Ehlers-Danlos syndrome(s)?
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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Contact@gersedbelgique.com
Www.gersedbelgium.com
Www.doctordaens.be