My husband of almost sixteen years has Marfan syndrome. He is 6’9" and very thin and is starting to get the concavity in his breastbone area and I can see the roof of his mouth thing happening because his teeth look subtly different.

We don’t have health insurance though I am actively looking for a job with insurance. He works remodeling houses (his dream – the only job he has had that he liked out of security and computers and other kinds of construction) for himself and comes home just dead tired after working.

I get it and I don’t mind it.

I just see him getting a tiny bit worse as the months go by and it angers me. I want him here to see our grandchildren and grow old with me.

I can’t imagine ever loving anyone else and I only want to be with him. We had problems then fought to save our marriage. If we then lose it over a genetic thing we can’t do anything about I don’t know if I will ever get over my rage.

We have three kids who so far do not have Marfan’s. Our son, 15, is 6’9" but given our heights that is not so weird. Our daughter and little son are not as hugely tall compared to their classmates but certainly are not short. And none of them has any symptoms of Marfan at all. Trust me I am grateful for that as that is a statistical miracle!

Just wondering if there are others out there with Marfan in the family scared for the future.
LOL. I can google and look at wikipedia. I was hoping to hear from family members, people with Marfan, and medical people about real-life experiences. Thanks, though, and I realize I didn’t make that clear in my question. :-)

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