24th February 2018 at 2 PM : patients meeting in Brussel organized by FMD-Be

The first meeting to be organised by FMD-Be was held in the afternoon of the 24th February in the magnificent setting of the Club de la Fondation Universitaire, rue d’Egmont, Brussels.

FMD-Be would like to thank the Fondation Menarini, who sponsorship kindly provided simultaneous translations ( in English – French – Dutch) for the expert’s presentations and the discussions that followed.

To resume, twenty one patients were present  : coming mainly from Belgium, but also from the Netherlands, France, Switzerland, and the UK.

We would also especially like to thank Pam Mace, executive director of the FMDSA (USA) and Madelon Bouwmeester of FMDGroepNL (Netherlands) who were also present and have both shared their experiences and provided great support to us here at FMD-Be.

It was also wonderful to see Karen Rockell ( FMD UK and Ireland FB group/ Beat SCAD co- founder) and Rebecca Breslin ( Beat SCAD UK co-founder) with us representing UK Patients.

Three international experts presented the latest thinking on FMD and responded to questions from the patients : The Professors Patricia Van der Niepen (VUB-Belgium), Alexandre Persu ( UCL – Belgium) and Heather Gornik ( Cleveland – USA).

We thank them for their time and sharing their knowledge with us.

A summary of the meeting, validated by the experts is in preparation : We will keep you updated !

To see the program , click here : Program 24-2-2018 -WEB

20 May 2017 : FMDSA 10th Annual Meeting on Fibromuscular Dysplasia in Cleveland, Ohio

The FMDSA (Fibromuscular Dysplasia Society of America) are hosting their 10th annual FMDSA meeting (also in Cleveland,Ohio) :  this is a meeting for FMD patients and FMDSA members.

The 10th annual FMDSA meeting was held the 20th May 2017 following the medical symposium in Cleveland.

Cathlin Jamison represented FMD-Be at this meeting.

What can she share about her experience at this meeting?

“I had the chance to meet with many patients and hear their FMD stories, and to see as FMD patients we all have so many different stories to tell. It was very inspiring to be in the room with so many patients and FMD experts and see the exchange of information and experiences.

For me personally, one thing that stands out from the patient meeting was hearing from the patients. Families who have had several members diagnosed, this is not something I have had experience of in Belgium – yet!  It was also great to hear from younger FMD patients, some diagnosed since childhood, and also from some of the men within the group.

It highlights for me the importance of patients sharing their stories within a group to help provide support within that community. The FMDSA already have patient stories on their website and it is something we are working on for the FMD-Be website.”

 

In terms of information given during the meeting :

The US registry –  now has 1663 patients enrolled in 14 centres.

-the most common manifestations of FMD are headaches, high blood pressure, followed by pulsatile tinnitus (whooshing), dizziness, cervical bruit and neck pain.

– mean age at diagnosis is 47 years, but it can be found at any age.

-men with FMD are more likely to have renal or visceral artery involvement, and are twice as likely to have dissection or aneurysm than women.

-some patients in the registry have now been followed for eight years.

-paediatric patients are more likely to have renal or mesenteric involvement, or middle aortic syndrome.

FMD and SCAD – they are clearly associated, and the link is being closely scrutinised.

It is now felt that up to 70% of women who suffer SCAD may have FMD (and not just in the coronary arteries), however, it is considered much rarer for an FMD patient to go on to suffer SCAD.

Interviews of some of the speakers present at the meeting are available here (in English) http://www.fmdsa.org/news/annual_conference

You can find further information about the meeting : http://www.fmdsa.org/news/annual_conference

Our lecture at the Second National Meeting on Fibromuscular Dysplasia (Brussel -10/12/2016)

Please find here our lecture  “FMD patient associations : Belgian experience and European perspectives (C. Jamison and V. Godin, FMD-Be)” at the Second National Meeting on Fibromuscular Dysplasia .

fmd-patients-associations-belgian-experience-and-european-perspectives-10-12-2016-engl