Do people with marfan syndrome ever live long lives?
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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Filed under: How To Save A Marriage
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Has there been a MFS diagnosis or are you guessing? The things you mention are only skeletal and the chest and roof of mouth aren’t things that typically happen later in life. If your husband has Marfan’s each child has a 50/50 chance of having it also, it isn’t something that just happens eventually. If skeletal features are all that you are going by it could be a different connective tissue disorder or even another type of problem.
In answer to the actual question, yes Marfan patients with treatment and taking care of themselves can live normal lifespans. I believe the last average I heard was 74 which is close to normal although even normal spans are increasing all the time also. I know marfs in their 60′s, 70′s and I believe one is in her 80′s or very close at least.
If he does have MFS, building is probably pushing the limits as there would be a lot of pressure on the heart/aorta which is really the life-threatening part of Marfan. He and the children should have yearly echos at the very minimum.
There are several Marfan groups online, almost every public forum and some personal websites. Yahoo for example, has a group Marfan support and chat which allows posts and the option to chat with other patients or family members, I know there are some older members in that group and there are links to some other groups from that site also.
I googled it and found a couple sites. Check these out:
1) http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=9
2) http://en.wikipedia.org/wiki/Marfan_syndrome
There are lots more, just type "Marfan Syndrome" in google.
The National Marfan Foundation website features a social network specifically for individuals and family members with Marfan syndrome and related conditions. There are forums, blogs, live chat (1-1 and group) and much more. There is a great community of people there that may help you feel more connected and informed. http://nmfconnect.marfan.org
Well I have to same thing going on but I have been with my husband for 5 years we have two kids and our son also has marfans. My husband is 26 and no longer can workor it could kill him. His heart is growing and nothing else is and the doctors have never seen anything like this with marfans. I could not see myself living without him. He might need a heart transplant. If anyone has heard of this happening with marfans or want to talk please email me I could really use the suport cuz its so hard. And I have noone to talk to about. I try to talk to him but it scares him as much as it does me. So please.
Ashley_allegre@tmail.com or mistressofdragons06@yahoo.com I have also done so much research I know a lot about it and can answer questions about if anyone needs anything god bless anyone who has to go through this
Hi, Marfan syndrome is not a life threatening disorder, particularly if you know about it in time. There have been lots of famous people who have gone on to attain great heights in their chosen field. Timely diagnosis and visiting the required specialists from time to time can help deal with most of the problems associated with this disorder graciously.
Chin up. And face it with courage. Remember, you have to be doubly inspired in order to make him feel better.