Comments on: Do people with marfan syndrome ever live long lives? http://howdoigetmyexboyfriendback.org/1634/do-people-with-marfan-syndrome-ever-live-long-lives/ Sat, 11 Feb 2012 14:09:15 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: ashley http://howdoigetmyexboyfriendback.org/1634/do-people-with-marfan-syndrome-ever-live-long-lives/comment-page-1/#comment-71273 ashley Mon, 15 Nov 2010 12:05:37 +0000 http://howdoigetmyexboyfriendback.org/1634/do-people-with-marfan-syndrome-ever-live-long-lives/#comment-71273 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 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

]]> By: Jonathan Martin http://howdoigetmyexboyfriendback.org/1634/do-people-with-marfan-syndrome-ever-live-long-lives/comment-page-1/#comment-6812 Jonathan Martin Sat, 10 Oct 2009 18:06:12 +0000 http://howdoigetmyexboyfriendback.org/1634/do-people-with-marfan-syndrome-ever-live-long-lives/#comment-6812 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 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

]]> By: mystique http://howdoigetmyexboyfriendback.org/1634/do-people-with-marfan-syndrome-ever-live-long-lives/comment-page-1/#comment-6334 mystique Sat, 03 Oct 2009 16:51:52 +0000 http://howdoigetmyexboyfriendback.org/1634/do-people-with-marfan-syndrome-ever-live-long-lives/#comment-6334 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. 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.

]]> By: Turmoyl http://howdoigetmyexboyfriendback.org/1634/do-people-with-marfan-syndrome-ever-live-long-lives/comment-page-1/#comment-6335 Turmoyl Sat, 03 Oct 2009 16:51:52 +0000 http://howdoigetmyexboyfriendback.org/1634/do-people-with-marfan-syndrome-ever-live-long-lives/#comment-6335 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. 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.

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