Hi to all,
this is my first post here on this forum, and i do really hope i get some other opinions, rather then sticking only with the ones which my GP tells me.
I was diagnosed with Marfan Syndrome when i was about 14 years Old.
I had an appointment few days ago in which there was a new doctor from U.K. who came and visited me. The first thing she said to me is that i don't look like marfan.
Apart from all those i do have but heart problems with leaking valves which i will be needing a surgery for soon. My aorta might also be getting wider, but i'm carefully monitoring it with my cardiologist once a year or more.
To make things more complicated when i was born i was diagnosed of having Tetralogy of fallot. This makes me the First Human in medical history which had both Conditions (tetralogy + marfan) at such a young age at that date ( don't know if i'm still alone ) nice to be unique
I do tough have a side of my chest a bit bigger then the other side, but i think that's because of the tetralogy problem.
I will ask for a genetic test to be 100% sure, but i wanted to hear some other feedback and some other experiences re this issue.
Also if i have marfans and was so lucky that none of the exterial features are present. will this be the same if i have children? or they might be effected in a different way then i am and not be so lucky, since the marfan is caused by a mutation in a gene.
thanks alot
this is my first post here on this forum, and i do really hope i get some other opinions, rather then sticking only with the ones which my GP tells me.
I was diagnosed with Marfan Syndrome when i was about 14 years Old.
I had an appointment few days ago in which there was a new doctor from U.K. who came and visited me. The first thing she said to me is that i don't look like marfan.
- I don't have elongated arms, fingers, face or feet. even tough that i'm the taller one in the family (just few cm taller then my brother)
- I do wear glasses, but also again, all my family does and i'm not the one who has the higher lense prescription.
- i don't have a swollen chest or opposite
- i don't have flat feet
- i don't have a short torso
Apart from all those i do have but heart problems with leaking valves which i will be needing a surgery for soon. My aorta might also be getting wider, but i'm carefully monitoring it with my cardiologist once a year or more.
To make things more complicated when i was born i was diagnosed of having Tetralogy of fallot. This makes me the First Human in medical history which had both Conditions (tetralogy + marfan) at such a young age at that date ( don't know if i'm still alone ) nice to be unique
I do tough have a side of my chest a bit bigger then the other side, but i think that's because of the tetralogy problem.
I will ask for a genetic test to be 100% sure, but i wanted to hear some other feedback and some other experiences re this issue.
Also if i have marfans and was so lucky that none of the exterial features are present. will this be the same if i have children? or they might be effected in a different way then i am and not be so lucky, since the marfan is caused by a mutation in a gene.
thanks alot