Hi Eva,

My son's doctor allow him to swim as much as he wants, all the others activities suppose to be with limitation (like running and soccer). Totally prohibited karate, boxing and any other contact sport.
My son loves to swim, he is very good runner, but I'm not so happy about his good running skills, because some times he's complaining about heart ache afterwards. Also he's a good Wii player and he does all the sport stuff from there. It's not all day activities though.
Actually he does whatever he wants in casual level, except contact sports.

Best regards,
Vira.

PS. sorry for mistakes, English isn't my 1-st language...

Hi, I myself have Marfans and im not able to do much.
Walking is hard, running is just not possible.
The doctors told me lots of swimming helps. and i love to swim.
no contact sports, no dancing.
It's really hard because im a really energenic person, but i stick to art mostly and music

Hi there, I'm new to exploring Marfan's as I was sent recently to a Geneticist for an official diagnosis this past summer due to the fact that my mother has the diagnosis and my children both exhibit symptoms of the syndrome. My question is around physical activity also. My son has not yet been sent for an official blood test diagnosis to determine the gene defect (pending) but he has several of the skeletal anomolies among others(so far nothing with the heart). He is, however, one of the most active 13 year olds I know with soccer, volleyball and track and field. Should I be concerned if he has not yet shown problems with the heart?

His "heart ache" may be pneumothorax. I frequently get them near my heart and before I knew what it was I thought it felt like a heart attack.



Vira wrote:

QUOTE:
Hi Eva,

My son's doctor allow him to swim as much as he wants, all the others activities suppose to be with limitation (like running and soccer). Totally prohibited karate, boxing and any other contact sport.
My son loves to swim, he is very good runner, but I'm not so happy about his good running skills, because some times he's complaining about heart ache afterwards. Also he's a good Wii player :-) and he does all the sport stuff from there. It's not all day activities though.
Actually he does whatever he wants in casual level, except contact sports.

Best regards,
Vira.

PS. sorry for mistakes, English isn't my 1-st language... :-)

Hi Tanialoos,

You should await a diagnosis before your son continues to participate in strenuous physical activity, which may or may not increase the rate of aortic dilation in the future or increase the risk for pneumothorax' in contact sports. As you have family history of Marfan it is better to be cautious. Please email me your mailing address at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it and I would be happy to mail you an information package which includes information and guidelines on physical activity. Also, a member from our Board of Directors would be happy to provide some guidance in this area. Please email me and I will provide you with his contact information.

Kind regards,
Sharmin Jamal
Manager, Canadian Marfan Association