I have decided to do another page, relating to all the people out there suffering from marfans. I will put your photos and your stories regarding your journey with marfans, with your permission. If you would like to briefly write out your story, email it to me at firstname.lastname@example.org and i shall put it up, so others can read and maybe contact you regarding Marfan's. Thankyou.
1. Jennifer Green - USA :
I too have marfans but I am just under six foot tall. I am overweight not the classic thin character. I have been diagonosed three times now. i have all other signs of marfans syndrome, but I have to be diagnosed everytime I go to a new doctor. I live in a small town in OKlahoma located in the USA. Not alot of doctors know about marfans syndrome here. I am lucky to have two sons without marfans. I have been told I was selfish for having children, and had my cardiologist to ask me what the hell was I doing trying to commit suicide. I asked him what he meant, and he said it was stupid for someone with marfans to have a baby, it was like commiting suicide. I replied well if a holes like you would have told me about this, instead of saying "you are okay, you can live a normal life" I would have thought about it before. I havent had any surgeries, but now I need a hysterectomy. I get pissed about the marfans, but I go on trying to be normal as I can. I love my life, I hate my marfans.
My Aorta When I was 24, my aorta measured 5.5 putting near surgery. I started having chest pains and waited a week before I went to the doctor. They discovered my aorta was ripped and wanted to do surgery, but because of my age wanted to do more tests to be positive. I spent three days praying almost non stop for God to heal me. I knew I was dying. I felt the touch of the hand of God on my heart. The doctor got to see the gap close up as he was doing a test where they run a tube from your inner thigh to your heart. After that my aorta size was 4.5, the regurgitation is less, and the mitrovalve is no longer torn either.
I thank God for my children, they are my reason for going on. I am going to close, but before I do one last thing I want to share with you. When the going gets rough, God is always there for us. As I send this letter I pray for God to keep you and your children in good health. Hope you have a great day. Smile you gotta friend who cares and shares your feelings.
Please feel free to email me at : email@example.com
1. Jennifer Green - USA :
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