While it confers an advantage when reaching for the giddy heights of the basketball hoop, Marfan syndrome can sometimes be a disadvantage for one’s state of mind. Our helpline is approached from time to time by Marfan patients questioning a link between their connective tissue disorder and depression. Certainly a connection exists for those patients who have trouble accepting or managing their condition.  But help is at hand with Dr Child’s top tips.

Q: I often feel flat and down and wonder whether this is to do with having Marfan syndrome? I was diagnosed with Marfan as a child and often struggled at school.

A: There is a definite correlation between connective tissue disorders and problematic mental health. But it can all be remedied with help and counselling and simply talking. Please don’t feel alone; there are many who feel just as you do.

Psychosocial issues can start at an early age. A survey found that children with Marfan syndrome often display more behavioral problems than the average child and can withdraw into themselves, compounding their feelings of anxiety and loneliness. It’s that feeling of ‘being different’ and ‘other’. Especially so during teenage years when hormones run rampant and one’s physical image becomes all important. Marfan patients often start and finish puberty earlier than in the normal population and the physical features of Marfan syndrome may appear for the first time and in fact worsen. They will feel quite self-conscious, noticing how different they look to others, and will struggle with their body image. Of course, this is exacerbated if they are bullied for their long feet and height, resulting in them having fewer friends than their peers.

This all carries into adulthood and beyond. It is not helped when you feel fatigued as Marfan patients often do. But help is at hand. There are many ways in which to work through your feelings of depression. Always avoid internalizing them – it’s much better to discuss them with like-minded people on the Marfan Syndrome UK Forum [link]. Keep fit through gentle, regular exercise such as walking, swimming, golf. Develop your skills and hobbies – musical including singing, or artistic including photography, or computer skills. Indulge in things that make you feel happier. Practise your sense of humour. Professional psychological counselling may help to improve both self-image and social interaction.

I’m attaching a link to our Guide for Young Adults 

There are always people to support and help you.

I hope this is helpful.

By Dr Anne Child & Victoria Hilton

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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