Marfans in pre-teen

Anon Imperfect Mum

Marfans in pre-teen

Hi
We have two boys, one a teenager and one a pre-teen. Both are tall for their age and very skinny.
While visiting the Paediatrician today, he mentioned the youngest showed signs of Marfans Syndrome (he hasn'tseen the eldest). High palate, long arms and legs, skinny, flexible, knock knees etc.
I have a friend with a severe case, but haven't seen it in a child in a milder form. Is anyone able to tell me their story, ie diagnosed as teenagers and not younger?
No family history, only my grandfather who died suddenly from a heart attack.

Posted in:  Kids, Teenagers, Tips and Advice

1 Replies

Anon Imperfect Mum

Mild marfans usually just requires cardiology reviews and caution with exercise not to over extend joints. Avoidance of heavy job types due to being more easily fatigued is also a good idea but in general it is not a terrible diagnosis. Speak to a specialist xx

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