By Dr Dieter Benninghoven

With emphasis naturally placed on its medical management, the clinical approach to Marfan syndrome has dwelt far less on the condition’s psychosocial ramifications, of which there are many. To represent this ‘invisible’ aspect of the syndrome, the mental manifestation, we invited leading German psychologist Dr Benninghoven, from the University of Luebeck and the Muehlenberg Rehabilitations Clinic to our recent Information Day.

Opening the afternoon session, Dr Benninghoven spoke immediately of his clinic’s long-established – and prescient in retrospect - treatment regime. Since 2014, the Muehlenberg Rehabilitation Clinic with the University of Hamburg has welcomed groups of 10 to 12 Marfan patients for a three-week rehabilitation camp within a multi-disciplinary context. In doing so it has gathered precious empirical data that is otherwise rare. Whilst research into the medical consequences of Marfan syndrome has burgeoned over the years, studies of the syndrome’s attendant psychological effects are conversely few.

Empirically speaking, it is known that Marfan syndrome as a chronic illness can impair one’s quality of life - socially, physically and psychologically. Curiously this does not correlate to the severity of the syndrome’s manifestation in the individual. Depression tends to first set in during Marfan adolescence when body image insecurity is acutely felt, and a reluctance to comply with doctors’ recommendations is similarly felt. The prospect of a life-limiting condition, the feeling of ‘otherness’ amongst your peers, all of this is a lot to contend with when navigating teenage hormones. As Marfan folk grow older and form relationships, the possibility of children and the attendant potential of passing on your genes is worrisome. 50% of Marfan patients marry and go on to have children. In the context of careers, Marfan syndrome can usher an earlier-than-normal retirement and limit your physical involvement.

To live fully and happily with Marfan syndrome, Dr Benninghoven advocates an attitude of acceptance, whilst stressing that knowledge is power! Become intimately acquainted with your condition! See below for his top tips. And in the meantime, his three-week camps in Northern Germany stimulate physical and psychological well-being. If only we had more here.

* Accept what you cannot change. * Accept your fears  * Continue to pursue your personal goals * Engage in active coping style * Ask for information * Connect with other affected people * Practise Mindfulness – is your Mind Full or are you Mindful? * Clarify personal values * Accept reality gaps.

For more information please email [email protected]

The Marfan Trust is registered in England and Wales under charity number 328070 at Guy Scadding Building, Dovehouse Street, London SW3 6LY. Contact us at [email protected] or by phone on + 44 (0)20 7594 1605
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