Unfortunately, I've been amazed to see so many appointments no longer appear in the "New Patient" appointment list, even though no one has cancelled them.
The reason is unknown: an error on the appointment website? Cancellation by mistake while checking the appointment? Server error? Bug in the appointment-setting company? The mystery is total...
I'm obviously baffled by this situation, especially as other patients have since covered for the cancelled places.
So everyone needs to check their appointments by going to the appointment booking site (it appears when you click on the new appointment tab).
In addition, all actual appointments have an SMS reminder the day before the scheduled appointment. If this is not the case, there is a problem of this type.
My appointments are currently fully booked until 2027 (unless a patient cancels individually, of course, which can happen).
While waiting for an appointment with me, if you wish, and in order to make progress in your diagnosis and treatment, I can advise you BY E-MAIL on another doctor who is familiar with SED. This is only if you are indeed in this delicate situation.
Sorry again for any inconvenience beyond my control.
In principle, I repeat, this only concerns a limited number of patients registered as "new patients".
Skin biopsy with Electron Microscopy (EM) examination hashigh sensitivity and low specificity in hypermobile Ehlers-Danlos Syndrome (hEDS). In fact, skin biopsy most often shows the same abnormalities in asymptomatic hypermobile patients, patients with Hypermobility Spectrum Disorders and those actually suffering from hypermobile Ehlers-Danlos Syndrome (hEDS).
There is therefore no need to perform a skin biopsy in all patients if the questioning, history and clinical examination are in favor of hEDS, and if the 2017 New York Criteria are validated.
Personally, I currently only perform skin biopsies when patients have signs and symptoms of hEDS but are no longer hypermobile for one reason or another (osteoarthritis, diffuse muscle contractures, musculo-tendinous retraction reducing joint amplitude, etc.), OR when I suspect a subtype other than hEDS.), OR when I suspect a subtype of EDS other than hEDS: Classical EDS (+ genetic counselling), Vascular EDS (+ genetic counselling), Cyphoscoliotic EDS (+ genetic counselling), or Arthrochalastic or Dermatosparaxis EDS (very rare, + genetic counselling) - all these subtypes have features in ME that are different from those described in hEDS. We can also see anomalies pointing towards a mixed SED/Osteogenesis Imperfecta (SED/OI) disease in ME.
In theory, mutual insurance companies are not allowed to refuse a heavy physical therapy agreement on the pretext that the biopsy has not been carried out, even though the NEW YORK 2017 Criteria have been met!
The articles that followed the 2016 scientific meetingsand led to the newNEW YorkCriteria2017 emphasize that Diagnosis is essentially CLINICAL but skin BIOPSIA, in some cases (see above), can STRENGTHEN the diagnosis or clinical impression of the EDS physician.
Contrary to a lot of "fake news",skin biopsy and EM are performed in many countries, including Belgium, Switzerland, Germany, the Nordic countries, etc. In other countries, the dermis is not examined in EM most of the time, because no one has been trained and/or has sufficient experience in this field. In other countries, the dermis is not examined in ME most of the time because no one has been trained in this examination and/or has sufficient experience in it.
Many scientific articles on SED include electron microscopy illustrations, and to deny this is pure and simple bad faith.
The Annual General Meeting (AGM) 2023 will be held on Saturday, October 21, 2023 at the GERSED BELGIQUE head office, Ninoofsesteenweg 244, 1700 Dilbeek, from 4:30 pm to 6:00 pm.
In order to participate actively or to give a proxy to a member of your choice who will be present at the AGM, you must, as every year, be up to date with your membership fees for 2023 (i.e. 40€ for healthcare professionals and 25€ for non-healthcare professionals).
It is with great sadness that we inform you of the death of Professor Michel Vervoort, at the age of 52.
Michel Vervoort was Professor of Genetics at the University of Paris-Diderot and researcher at the Institut Jacques Monod and the FNRS.
In addition, he was kind enough to become involved with Ehlers-Danlos Syndrome and help us write the books "Taming Ehlers-Danlos Syndrome" and "Transforming Ehlers-Danlos Syndrome".
This is a great loss for the scientific world and a source of deep sorrow for all of us.
Dr. Stéphane Daens and another member of GERSED BELGIUM will go to his funeral to pay their last respects.
We send our sincere condolences to his family and the assurance of our immense distress.
A word from Dr Daens, President of GERSED BELGIUM :
"I knew Michel since the Collège Saint-Pierre in Jette (Brussels, Belgium); we have been friends and companions both at the University of Brussels and afterwards. It has been almost 40 years. I miss you so much my friend."
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.