Marfan Blog Symptoms: Tall, thin stature ~ Long fingers ~ Unusually long arms and legs ~
Curvature of the spine Chest bone that curves inward or outward ~ Flat feet or high arches ~ Nearsightedness Weakening of the connective tissue, most dangerously of the aorta
Blogging things of interest to those
of us with the Marfan syndrome, by Jeanette Navia
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2:23 PM Amazon.com: Books: Long for This World : A Novel is a novel by Michael Byers, son of Peter Byers, who is on the Professional Advisory Board of the NMF. The main character is the son of a geneticist who is studying a fictional genetic disorder (not Marfan syndrome). (I'll edit this post later when I have more information about the book.)
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12:14 PM This sounds like it could be a useful foundation, though I'm leery since there are pharmaceutical companies backing it. If you use it, please send me feedback about it. Patient Advocate Foundation
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11:49 PM Jane Harris I am so sad to report the loss of a good e-mail buddy, Jane Harris. Jane, a vocal member of Marfan-List and an active member of the NationalMarfanFoundation, died unexpectedly very early Monday morning. I don't yet know the cause of her death. She had aortic problems and was hoping to have surgery relatively soon, but her doctors didn't think she'd need the surgery for a while. However she died, she will be missed terribly much by many.
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8:22 PM Asperger's and Marfan Below, I added a post saying that I have often heard that people with Marfan may have a slightly higher chance of having Asperger's syndrome, which has been classified as a type of autism. Here is the abstract of Asperger's syndrome and ligamentous laxity which is the closest I've found to anything officially linking the two types of syndromes. However, on Marfan-List and in personal e-mails from others in the Marfan community over the past six years, there seems to be a lot of anecdotal stories about people with Marfan maybe being slightly more prone to be classified as having Asperger's.
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8:24 PM This is an article about a young woman with Stickler's syndrome, which in some ways is similar to the Marfan syndrome. Determined Spirit from the Florida Times Union. Thanks, Grandma Marf!
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11:36 PM Here's an article about Oregon fisherwoman Jennie Logsdon Martin, "mother and artist, a classical pianist, a website designer, and one of the most impassioned anglers on the Oregon coast." American Profile: Angling For Life
Another article about Jennie, from several years ago from OregonLive.com, is still online at She always finds time for fishing. And check out her website at www.ifish.net, especially if you're really into fishing!
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9:35 AM Mathew Rudes, 16, who was born with severe infantile Marfan syndrome, is mentioned in this Newsweek article about chronic pain in children. Small Patients, Big Pain
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