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

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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.

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Marfan Blog
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Saturday, July 24, 2004

Haley
Posted at 9:01 PM



Photo #1 (Haleybaby)
Look at those long fingers! Those were the first words I heard when my daughter, Haley was born. Little did we know that these long fingers were a tell-tale sign of the Marfan syndrome. 2 1/2 years after she was born, Haley was diagnosed with Marfan syndrome -- not because of her long, spiderlike fingers, but due to her flexible flat feet, another characteristic of individuals with Marfan syndrome.

Photo #2 (Haley4)
Today, Haley is a happy, energetic 4 1/2-year-old. So far, the disorder has affected her skeletal and cardiovascular systems.

This includes:

  • Extremely tall for her age

  • Hypermobile

  • Flexible Flat Feet

  • Scoliosis

  • Long Armspan

  • Down-slanted, Deepset Eyes

  • High Arched Palatte

  • Enlarged Aorta

  • Mitral Valve Prolapse


While she tends to tire easily, Haley does not let the disorder slow her down. She loves to ride her bike, go swimming, sing, dance, play with her Barbies and her big brother.



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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.
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