Genetic Disorders Forum - Marfan's syndrome

Conditions and Diseases > Genetic Disorders Forum > Marfan's syndrome

Q: Marfan's syndrome

asked by: niceman on January 25th, 2009

New User

Hi! I am a 20 year old boy .I was diagnosed with marfan's syndrome in 2007.I felt upset , but my doctor told there's nothin' to worry.I knew i hade something wierd.I have very loose joints, curved spine, scolositis, myopia and irregular body structure(like long legs).My doctor never really sought of scaring me but he told me that you had "nothing", but life goes on .I am very tall ,6"3, and nearly 65 kgs.I feel a cracking or slipping in my joints and wrists,hip bone and nearly in all joints.I would like to mention that i am very thin, as Doctor said due to "mvp", my heart needs more energy and oxygen to work and it all's been utilized fast.He kind of laughed and said ("you don't need to worry, young man, you will alaways remain thin").I felt strange as i'd alaways wan'ned a good built.But my worst area is "mvp" about which i have posted in "heart" section.No ways this is about "Marfans".I have many doubts in my mind and i need all your help fellow members.My doctor really never stopped me from any physical exersize, but i have fears'n'doubts(oh!i'm confused brain).Now many of my frien's and relatives say i should go for a "gym".I haven't really told them bout' all this!!Now:-

(1)Should i start workout in a gym?
(2)Will it affect my "mvp" area?
(3)Should i increase my diet?
(4)What kind of medicine should i take to suppress "anxiety" and"panic" attacks?
(5)should i resist sports and gym?
(6)what kind of medicine should i take?

hoping for quick and useful responses! feel free to answer! become eeeeeeee Healthy!!
thanks!!!!!

Replies(6)

DanaP

replied on February 27th, 2009

New User

I am not a doctor, but my child and husband both have Marfan Syndrome, so I know a great deal about this. Do not ever lift weights, or anything heavy. Do not engage in sports where you may be hit hard (contact sports) like basketball (even though you are tall!), soccer, gymnastics, skiing etc. Or, any sports where there is a fast rise in blood pressure. You need to find a new doctor who knows more about your condition. They will measure your aorta and monitor the dilation, every 6 months, if any. You may be put on blood pressure medication, like beta blockers. There is a new drug called Losartan, which is in a trial right now, which stops dilation and also may shrink aortic size. You need to have your eyes checked annually because your lens may become dislocated.
This is a very serious condition. Your doctor is wrong to say "don't worry", but with proper care, you should live a healthy, long life.
For relaxation and anxiety, I recommend yoga, walking, swimming.........Lastly, never smoke!!! You are at increased risk of asthma and emphysema. Always pay attention if you have a pain in your stomach or back, that radiates down your arm. Get to the hospital immediately if this happens!

cmatsukes

replied on April 15th, 2009

New User

I had a husband that had ehlers danolos syndrome and his brother had marfan syndrome which are kindreds to each other. My husband was prone to anerysums and had one at 14 and lost all but a short part of his bowel. He did live to be 48 We were married for almost 20 years had a good life but alot of medical problmes along the way. My brother in law lived to be 36 and also died of a an anerysum he to was tall 6ft3 and long legs and long arms. There mother had was the one that had the syndrome So to your answer of sports no no don't do that but also have your parents find you a good physican that is familar with this syndrome so that you can get all the information you need. My nephew also has Marfins syndrom inherited from my brother in law and already had a anerysum at 13. So please dont have children me and my husband decided when we got married not to have any children due to this. Also have another brother in law has it but he is still living at 51 had 3 children and his boy has it too.
I am not trying to be gloom but take care of yourself and live your life. My husband did he faced great health problems if you want to learn more let me know. chris.

Users who thank cmatsukes for this post: niceman

cmatsukes

replied on April 15th, 2009

New User

oh also the thinness my husband even before 14 was always thin thin no matter what he ate also my brother in law the same his child my nephew also very thin so I think this is due to Marfan but I am no doc and not your heart.

niceman

replied on April 18th, 2009

New User

Thank you for your reply.I will keep all that in my mind and take care myself. thanks a lot for interacting and i wish all your loved ones become healthy and live long.

kibo

replied on June 11th, 2009

New User

I'm 21 yo male and have just discovered that I have a pectus excavatum on my chest.. The condition are not too bad so I kinda overlook it for years.. I always thought there's no medical terms of my chest deformation. Every time I went to the hospital the doctors examine my chest with stetoscope but never said anything.

recently I googled out and found out sbout pectus excavatum.. And that's how I know marfan syndrome. the truth is I'm very tall esp for asian (192 cms/6'4"??) and always been skinny.. I wore glasses and my breath is short..

I have 2 questions:
1. I dont have problem with my heart and joints. Is it possible for me to have marfan syndrome??

2. I read niceman number 4 question. do Marfan syndrome associated with panic and anxiety attacks?

bigracket

replied on September 18th, 2009

New User

Marfans

Hi Kibo. I would not leap to any diagnosis just yet especially self diagnosis. Pectus excavatum is just one sign of Marfans and does not constitute a differential diagnosis. However the fact that you are tall and slim also makes me think you need to be followed up sooner rather than later. go and see your doctor and mention Marfans it cant hurt. Answer 1 YES ITS POSSIBLE. Answer 2 YES TO PANIC/ANXIETY atttacks (but not always)

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