A rare health condition can leave you lonely. Lonely in your situation and frightened by your ‘difference’. This feeling can be amplified when you are the sole member of the family to be affected. In 25% of Marfan patients the gene contains a new mutation as a seemingly random occurrence. It leaves you asking of yourself and others, “why me?”. An eight-year-old Marfan boy often puts this question to his mother. With three healthy siblings, he feels unfairly singled out and lives in a perpetual state of fear. HIs mother is at a loss to explain to him the reason for his syndrome, leaving his question “Why Me?” lingering.

Q: I am a physiotherapist and am treating an 8-year-old boy. He has Marfan syndrome and is one of four children, the other three being unaffected. As far as I know his parents are unaffected. His mother called me as she needs help from a mental health perspective. Her son is asking her why he alone is affected - “it’s not fair” is something he often says, quite reasonably so. If he is hit in the chest he thinks he is dying. He has an echocardiogram every six months so I believe he is quite affected by the syndrome. What should we say to him?

A: This is often the way with young children who are the first in their family to have Marfan syndrome. They will naturally ask ‘why me’ when their health can prohibit them from certain activities and in doing so isolate them from their peers. Particularly in team sports and classroom activities.

There will probably be restrictions imposed on him by his syndrome. It may be he has poor eyesight, lax and painful joints, and with his six-monthly echos he perhaps has cardiac problems. School absence may be frequent because of hospital appointments and corrective surgery for any skeletal problems he may have. Again, this all unfairly marks him out from his peers. Other problems may be behavioural, anxiety and depression, low self-esteem, and having fewer friends than their peers. He may be teased or bullied at school.

To mitigate all this, it’s very important that his teachers, his peers and his parents are taught about Marfan syndrome. That way he will feel less isolated. It’s the responsibility of those around him to educate themselves about his condition and understand the restrictions it can impose upon him. And they must definitely be sensitive to any cosmetic issues. Marfan children grow tall, very tall, and they are often very lanky. Insensitive comments and remarks on his height are massively unhelpful and will ‘other’ him.

I am going to send you our leaflet Psychosocial Aspects of Marfan Syndrome but I also suggest that you speak to his paediatric cardiologist at the Royal Brompton Hospital. She treats children every day with Marfan and related disorders and can help to counsel him and his parents in what to say to him. The patient liaison nurse can be contacted for advice at any time.

It will also help if he speaks to a peer, a boy of his age similarly affected. We will speak to our Marfan community for anyone willing to help.

Useful resources for reference are Psychosocial Aspects of Marfan Syndrome, the Paediatric Guide and Booklet for Teachers.

(By Dr Anne Child & Victoria Hilton)

Help Needed

If you know of a 8-12 year old boy who is similarly affected,  please do email [email protected] Alternatively if you are a parent who has had to answer such questions and wouldn't mind sharing your advice, again please do email us.

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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