Update from the ePAG-HTAD-WG at VASCERN (March 2019)

Text by Lise Murphy

Marfan people – Start moving for your health! Three times a week.

Advice on safe training here in a video with Prof. Guillaume Jondeau.

Why?

This VASCERN initiative brought about by patients and physicians who see that moderate physical activity, practiced regularly, improves physical and emotional wellbeing. Improves cardiovascular capacity, reduces blood pressure and improves muscle tone, relieving pain associated with the musculoskeletal system.

How?

We are talking about swimming, walking and riding a bike for 30 minutes three times a week as well as some other exercises, but generally we avoid movements where we strain muscles standing still (static movements) or heavy sudden movements, where you say “oomph”. Watch  #3aweek video

What does VASCERN do?

In 2019 physicians and patient representatives will encourage everybody to move in a safe manner.  We have a focus here, shown in videos, activities and motivating change.

Social networks

#3aweek on FB   Looking forward to seeing what you do on social media. Please send us stories about what you do in your countries so that we can share! See below! And please don’t forget to use #3aweek #VASCERN #HTAD when sharing your goals.

What do I do as an individual with Marfan or another HTAD?

Get moving three times a week for 30 minutes. Start gently, ask advice from your doctor if needed. Record what you do, preferably in an app, on FB, on Instagram. Tell others what you do! Then you encourage other Marfan friends. For example use apps like you already have on smartphones or others  to create groups.

A lot of people want a goal so collect steps or simply walk, swim or cycle 2500 or 5000 km during the year. Or swim, walk and cycle for 30 minutes and think happy thoughts! Challenge yourself! Compete against yourself or friends! Please use: #3aweek #VASCERN #HTAD, so we can track the goals of the community and share it with others.

What happens in the different countries?

This is what we do in Sweden: Dags att röra på sig!/ #3iveckan

Find info-material here, our book “Må bra med Marfan”. . We interview and show videos in Swedish about training with our physiotherapist Pia Bergendahl and cardiologist Eva Mattson at Karolinska. Newsletters, FB and Instagram  we do of course. Our annual meeting 2^nd March 2019 in Gothenburg was mostly about training and Marfan with Cardiologist Mikael Dellborg. We meet up at the different university hospitals with FIKA (coffee and chats) first out is Karolinska/Solna 11^th March at 6  We will co-operate with the other Scandinavian countries.

In Spain: ¡Marfantásticos, empezad el año moviéndoos por vuestra salud!

Spain will also participate in the «3 a week» campaign. Their annual meeting is taking place in February. You can register here.

In France: Continuez à bouger pour votre santé!

This is what we do in France:

• Release end of November of our biannual Newsletter with a special dossier about Marfan patients and physical activities and sport (15 pages)
• Reedition of our Brochure: Recommendations “Sports, Activités Physiques et Marfan “, available also through the Marfan association website.
• Participation at an INSERM seminar on collective expertise about the role of physical activity in the prevention and the treatment of chronic diseases
• FACEBOOK page and website will be updated with infos related to this Vascern/HTAD initiative

In Germany: Marfis, starte das Jahr mit etwas Bewegung für eure Gesundheit!

We have info-material online here, or you can ask for a printed version of the Booklet “Sport und Fitness mit dem Marfan-Syndrom“, the “Flyer: Fitness und Reha” or both here. And for those who prefer “learning-by-doing”, there are still a few places left for our award-winning Marfan-Reha in Malente (8.-29.05.2019. Stand 12/2018). The first step is to fill this form. For more info contact our office.

Talk about training at the annual meeting and at all other meetings. We will share more information at our brand new FB-Page.

And what about your country? Next time we want to have news about your country here!

About the ePAG HTAD-Working Group at VASCERN

As you probably know, HTAD means Heritable Thoracic Aortic Diseases.

The ePAG HTAD is a network of patient organisations related to HTAD, working hand in hand with the doctors in the European Reference Networks for Vascular Diseases. For more info HTAD/VASCERN.

We are a robust little active patient advocates (ePAG HTAD-WG. If your organisation wants to join the network (passive) or even help us as an Advocate/Representant within our Working Group (active), you can join us here.

Lise Murphy, Co-chair, on behalf of the patients´ group at Heritable Thoracic Aorta Diseases, HTAD at VASCERN lisemurphy@gmail.com