Long, thin fingers typing away Marfan Life 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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Books of Interest

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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Sunday, August 07, 2005

Haley Dostalik
Posted by Bryan Jones at 12:59 AM



Haley is a beautiful, energetic, happy 5½ year-old girl who was diagnosed when she way 2 years-old with the Marfan syndrome. We all marveled at her long fingers and toes after she was born and how tall she seemed to be in comparison to everyone else in our family. Little did we know these were telltale signs of a disorder known as Marfan syndrome.

When Haley was 1½, we noticed that her feet were extremely flat and that she was beginning to walk on the inside of her feet. A local orthopedic specialist diagnosed her problem as flexible flat feet and recommended we come back in a year unless things got worse. About six months later we returned and were referred to another orthopedic specialist. He noticed how hyper-mobile Haley was (we call her Gumby) and suggested we see a genetic specialist. Thanks to his keen observation, the genetic specialist ordered an echocardiogram and full eye exam and we discovered that our daughter has an enlarged aorta and mitral valve prolapse. Today Haley is on Beta Blockers and is doing terrific. She has starteof scoliosis, but her prognosis remains great.

We encourage all parents to follow their instincts when it comes to their children. If something doesn’t seem right, it probably isn’t. If we hadn’t been proactive with Haley’s extremely flat feet, we never would have known that her heart was a ticking time bomb waiting to go off.


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