Diagnosis & treatment
It has been quite a search to find the right doctor to help Annemarie. Many doctors in the Netherlands and Belgium were visited. However Annemarie was sent home again and again, the doctors could not find anything. Thanks to a friend of Annemarie, who recognized certain symptoms from a documentary on Netflix, she recommended contacting the doctors in Barcelona.
After much contact already beforehand and sending Dutch MRI scans, it finally came to an interview with Dr. Olivier in Barcelona on April 28, 2022.
With a few questions, Dr. Olivier knew immediately what stage Annemarie was in in her disease process. He was able to make a diagnosis based on the MRI scans and anamnesis. Annemarie has Ehlers Danlos syndrome. As a result, she has a rare complication CCI/AAI. This doctor immediately indicated the steps and treatment Annemarie needs. An operation in which the affected vertebrae will be fixed. Finally a doctor who knows what it is, knows what he is talking about and why her body is no longer doing what it should. So nice that there is finally recognition, finally understanding and finally a prospect of a solution.
In the Netherlands, a study was supposed to be started at the LUMC in Leiden, but corona delayed that considerably. Unfortunately, there is no funding for this study to date.
This makes most of the patients divert to Barcelona. The only doctors who can offer treatment of CCI/AAI due to Ehlers Danlos syndrome in Europe are in Barcelona. There they have a lot of expertise and equipment where, among other things, the patient can be scanned sitting down with the neck in different positions. For these follow-up examinations, Annemarie has to travel to Spain so that she can be operated on immediately afterwards.
The treatment will consist of fixing her neck and part of her back so that Annemarie can regain her quality of life. This fixation will take over the function of surrounding tissues which are enormously weakened in Annemarie's case.
Report from the attending physician
Below you will find the report of the conversation with the doctor. It is a rather technical and medical story, but for clarity and transparency we show it. As you will understand, this is very personal information for Annemarie, so we ask you to treat it with respect.