Living With Marfans Syndrome....Gday all, im located in australia, i was diagnosed with Marfans Syndrome at the age of 22, I didnt listen to my Local GP back then, as i felt invisible, i am now 32 and suffering for this foolish mistake, i used to work in a Timber Mill, Stacking timer 8 hrs a days, 5 days a week, all sizes.
I am 6ft 7 , slim, pidgeon chested, scolliosis, and every day i am in pain, i have seen a GP about this and has him confused, as in why i have the pains, he doesnt take it serious enough i think, i do have 2 ask a question and i do hope someone can help me out with, My question is , does any suffer pains in aortic area 24/7 and some days just doing nothin like sittin on couch, the pain get sharper, i would like to hear from you, my family are been supportive as they can, though they seem to think a tablet will fix everything, when i was diagnosed with the Syndrome, i was one BETA Blockers, went back and seen me GP back then, n told me to stop taking them, so atm, i am on no medication, and i am worried.
My blood pressure is high and me GP i see, hasnt even put me on blood pressure tablets to help beat this , i would like to find other aussies who have this syndrome to talk to about it and share my story , there is so much more i could type, but been new here, im not sure if this site gets used anymore, im hoping someone can help me, i am now 32 and livin with Marfans Syndrome, isnt easy and i struggle daily to make it thru the day without feeling lousy and worthless.
Thanks For Reading, Hope someone or some people on here can help me out.
auzzieguy32 31-35, M 2 Responses 0 Oct 21, 2012