Marfan Foundation

The Marfan Foundation
Marfan syndrome is a genetic disorder that affects the body’s connective tissue. Connective tissue holds all the body’s cells, organs and tissue together. It also plays an important role in helping the body grow and develop properly. About 1 in 5,000 people have Marfan syndrome, including men and women of all races and ethnic groups. Every person’s experience with Marfan syndrome is slightly different. No one has every feature and people have different combinations of features. Some features of Marfan syndrome are easier to see than others. These include: long arms, legs and fingers, tall and thin body type, curved spine, chest sinks in or sticks out, flexible joints, flat feet, crowded teeth, and stretch marks on the skin that are not related to weight gain or loss. Harder-to-detect signs of Marfan syndrome include heart problems, especially those related to the aorta, the large blood vessel that carries blood away from the heart to the rest of the body. Other signs can include sudden lung collapse and eye problems, including severe nearsightedness, dislocated lens, detached retina, early glaucoma, and early cataracts. Special tests are often needed to detect these features.

Knowing the signs of Marfan syndrome can save lives. Medical experts estimate that nearly half the people who have Marfan syndrome don’t know it. This is something The Marfan Foundation is working hard to change.
http://www.marfan.org/

Joyce Maddox
TCI Marfan Liaison

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Tall Clubs International™ (TCI) is a social organization for tall adults! Our stated purpose is “to promote tall awareness among tall men and women, and in the community." With dozens of member clubs and over 1,000 members across the U.S. and Canada, we are truly an international not-for-profit organization.

Every year Tall Clubs International™ engages in social activities of mutual interest, travel for gatherings of members from several TCI clubs, a convention to conduct the business of the Corporation (with representatives of all clubs) and the selection a new Miss Tall International®, the official public representative and goodwill ambassador for TCI.