A wellness project 2012 and 2013

Physical and mental disorders

We already know that many persons with Marfan syndrome are helped by taking care of the body, in getting massages and eating right. We also know that many lives are occupied by thoughts about what it is like to have Marfan or of having children or another relative with Marfan. Many of us live with some anxiety and many would certainly be helpful to meet others in the same situation.

Wellness Year – A brand new venture To help people with Marfan syndrome with these problems we offer a wellness year with activities that soothe and heal and gives information, advice and inspiration on wellness specifically for people with Marfan syndrome.

Four meetings – four places Wellness activities will be offered four times at four different locations in 2013. The meetings will include sessions with four types of fitness activities; medical yoga, physiotherapy, massage and nutritional counseling.

Newsletter A newsletter will be produced, with fitness counseling for all members and others who are interested.

Target The meetings are for members in our assiciation (Svenska Marfanföreningen) who are over 15 years and a maximum number of participants per time is 14. If more than that applying to be with those who themselves have Marfan syndrome a priority. We also want to get in contact with people who have Marfan syndrome and who are not yet members of the association. These, we expect to achieve through information aimed at healthcare units that might receive patients with Marfan syndrome.

Goal The goal of wellness year and then yearly wellness sessions is to give our members the support, relief and tools in everyday life to take steps to ease their discomfort.

Wellness year run on The aim is also to create a network for those who participated in any of the four meetings, and who are interested in wellness. We expect about 20 people to continue in this network. The network will be given the opportunity to coach, inspire and motivate each other to develop their wellness efforts. The group, together with the coordinator develops the wellness newsletter.

Follow-up Meeting A year after the last wellness session, in november 2013, we offer both the network group and any new interested members in a follow-up meeting where the networking group will summarize how they think their chosen fitness activity has worked during the past year.

Newsletter The newsletter continues to come out once every other month even after the follow-up meeting, and until the follow-up meeting. The 20 in the network will continue to work with their health care and contribute experience (texts) on the wellness form as they have chosen to pursue. Karin Olsson collect these texts and puts together the newsletter. The newsletter will also present new wellness forms especially suited for people with Marfan syndrome and other similar state. Examples can be qi gong, pilates, walking with poles, other forms of yoga than medical yoga and adapted calmer gymnastics.

A wellness paperback-book The goal of the network group who want to continue is that, in cooperation with the Board and Karin, work out a paperback-book with wellness advice designed for people with Marfans syndrome and similar conditions and preferably also for other groups of people with rare disorders.

The book’s design, scope and content will be developed in close cooperation with the continuation group. Their experience of the various wellness activities are the backbone of the book.

The book will be distributed to our own members, the umbrella organization of Rare Disorders, the physiotherapists and doctors in healthcare and to interested sports facilities. The book will be distributed to people in the network group and other interested members of our association and members of other associations.

If you are interested, pleace contact us.


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