Marfan Life

Marfan Life is a place where people with the Marfan syndrome can learn from and meet others who live with Marfan. It is run by Jeanette Navia. I am 48 years old and have the Marfan syndrome. Information is my career; I am a cataloger in a public library and am currently studying for a Masters’ degree in Information Studies. Growing up, information about the Marfan syndrome was very difficult to find. Today, the Internet makes finding medical information about the syndrome much easier. It also makes sharing information between people and families dealing with the syndrome much easier, also.

I started Marfan-List in May, 1997 when it became clear that a need existed for people with the syndrome to discuss how they lived their lives. It is an e-mail discussion list, popularly called a “listserv.” I started Marfan Life when blogs were starting to be in fashion as a way of listing articles — mostly in the popular press — so people interested in Marfan could read more about the syndrome. Marfan Life Forum, a bulletin-board-based discussion group, was started in 2003. Unlike Marfan-List, posts to the Marfan Life Forum arefor the public to read.

If you would like to show appreciation for Marfan-List, Marfan Life and/or the Marfan Life Forum, please consider making a donation to the National Marfan Foundation for general support in honor of Marfan-List, the precursor to my other Marfan information sites. Thank you very much!

Jeanette Navia