Long, thin fingers typing away Marfan Life | Marfan Blog Long, thin fingers typing away

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
For medical information about the Marfan syndrome, visit the National Marfan Foundation

What is Marfan syndrome? Marfan Contacts (pen-pals) - Offline until futher notice. Marfan-List e-mail group Personal websites & blogs Marfan pictures Famous people Tall links Marfan humor E-cards Dural ectasia Miscellaneous Marfan pages Marfan organizations Links to Marfan info Links to general medical info Contents of this site

Marfan Life 2004 Project Blog posts

Instructions for donating online to the NMF for Project Blog


Read description of MarfMan



Site created & updated by Jeanette Navia
Books of Interest

Chicken Soup for the Fisherman's Soul
Jennie Logsdon Martin has a story in here. Her story is as much about living with the Marfan syndrome as it is about fishing.

Own Your Health
Roanne Weisman and her son have Marfan, and in some sections of the book they share their experiences.
Amazon.com

The Truth About Chronic Pain
A whole chapter is about Mathew Rudes' experiences. Mathew was born with severe Marfan symptoms.

The Official Patient's Sourcebook on Marfan Syndrome
I have not read this book and do not necessarily recommend it. You may want to see John's review of it at the bottom of Amazon.com's page.

Archives

Project Blog 2004 posts

Blogathon 2003 posts

February 2003
March 2003
April 2003
May 2003
June 2003
July 2003
August 2003
September 2003
October 2003
November 2003
December 2003
January 2004
February 2004
March 2004
April 2004
May 2004
June 2004
July 2004
August 2004
Marfan Blog
(news stories, events, newly discovered links)

Sunday, July 27, 2003


Posted at 6:00 AM
From Jenny in Sweden
Long live the Internet! If there was no Internet, the only person with the
Marfan syndrome I would ever have met, is my mother. And I would not even know how many marfs we are out there worldwide. But since there is something called the Internet I have contact with many people all around the world
with the same problems, speculations and questions as I have. I am not alone! And I can search for more information about this syndrome in various databases, online journals, chat groups and so forth. Thanks to the marfan-list I can ask almost 500 people about their experiences in different matters. And that is A LOT more than I would ever be able to do without the Internet...

/Jenny in Sweden

Some of the online journals, chat groups and so forth:
Newsgroup: alt.support.marfan
Newsgroup: alt.support.tall
Long Tall Folks' Journal on LiveJournal
Yahoo! Groups Marfans Support and Chat
Yahoo! Groups Marfans Support Group
Christians With Marfans
Hypermobility Forum
Australian Marfans Syndrome Support List (Oz Marfans) Open to all, not just Australians
Marfan Association UK Forum
Mailing List van Marfan.nl in Dutch
Marfan Francophone a Yahoo! group in French
Yahoo Groups Marfan Syndrome in Singapore
and of course Marfan-List



To see more of the Marfan Life Project Blog posts
click here
If you have dialup, it'll probably take a while to load. But it's worth the wait!

Top | Home

For medical information about the Marfan syndrome that has been approved by the Professional Advisory Board of the National Marfan Foundation, see the NMF website.
Marfan Life Info