24 februari 2018 : patiëntenvergadering in Brussel georganiseerd door FMD-Be

De eerste bijeenkomst georganiseerd door FMD-Be is doorgegaan op 24 februari 2018 in de namiddag in de mooie site van de Club van de Universitaire Stichting, Egmontstraat Brussel.

FMD-Be houdt eraan de organiserende Fondazione Menarini te danken omdat ze simultane vertaling voorzag ( Engels, Frans, Nederlands) van de presentaties van de experten en de daaropvolgende vraagstelling.

Er waren 21 patienten met hun naasten aanwezig: de meesten Belgen doch ook deelnemers uit Nederland, Frankrijk, Zwitserland en het Verenigd Koninkrijk.

We willen eveneens Pam Mace, executive director FMDSA (USA) en Madelon Bouwmeester van FMDgroep NL (Nederland) danken voor hun aanwezigheid, hun ervaringen die ze deelden en ons, de jonge equipe FMD-Be, sterk ondersteunden. Het was ook heel fijn om Karen Rockell (FMD UK en Ierland FB groep/Beat SCAD medestichter) en Rebecca Breslin (Beat SCAD UK medestichter) te ontmoeten ter vertegenwoordiging van de UK patienten.

Drie internationale experten presenteerden de laatste ontwikkelingen rond FMD en beantwoordden de vragen van de aanwezigen:  De Professoren Patricia Van Der Niepen (VUB – Belgie), Alexander Persu (UCL – Belgie) en Heather Gornik (Cleveland – USA). We danken hun hartelijk voor hun beschikbaarheid en de kennis die ze met ons deelden.

Een samenvatting van de bijeenkomst, gevalideerd door de experten, is in voorbereiding. We houden jullie op de hoogte!

Programma van de vergadering nog beschikbaar  : Programma FMD-Be vergadering 24 februari 2018

 

20 May 2017, Cleveland (Ohio) : FMDSA- 10th Annual Meeting on Fibromuscular Dysplasia

De FMDSA ( Fibromuscular Dysplasia Society of America) organiseert de 20 mei een ganze dag die uitsluitend zal richten op de patienten die van FMD lijden.

Cathlin Jamison was de vetegenwoordiger van FMD-Be. Was zegt zij ervan?

“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

 

Presentatie van de vereniging “FMD-Be” op de “Second National Meeting on Fibromuscular Dysplasia” (Brussel-10/12/2016)

Bijgaand vindt u onze presentatie “FMD patient associations : Belgian experience and European perspectives (C. Jamison and V. Godin, FMD-Be)”  in het Nederlands .

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