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The Marfan Foundation - Know the Signs, Fight for Victory

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Too often, Marfan syndrome is thrust into the spotlight because of the death of a well-known person who died and did not even know they had the condition. Jonathan Larson, the Tony Award-winning playwright of RENT, who died of an aortic dissection before his hit play opened on Broadway. Flo Hyman, the captain of the 1984 U.S. Olympic Volleyball Team, who collapsed on the court during a tournament in Japan. In both cases, Marfan was diagnosed at autopsy.

Now, due to the efforts of The Marfan Foundation, more people are diagnosed in time to receive life-saving treatment. Isaiah Austin, the Baylor University basketball star who was diagnosed before the 2014 NBA draft. Andy Erikson, finalist in NBC’s Last Comic Standing. Both were diagnosed in time to receive treatment and make lifestyle changes that will enable them to live a long and productive life.

                       Marfan

The Marfan Foundation, founded in 1981, is the only nonprofit organization that provides education and awareness, patient support, and funding for research that creates a brighter future for people living with Marfan syndrome and related disorders. These conditions affect 200,000 in the U.S.

People with Marfan syndrome can live a long lifespan with the condition, but only if they are diagnosed and treated. Tragically, medical experts say that half of the people with the condition don’t know it. Without treatment, they are at risk of a sudden early death from a tear in the aorta, the large artery that takes blood away from the heart.

The key factor is knowing the signs of Marfan syndrome that can lead to a diagnosis. Some signs are easy to see. 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.

An accurate and early diagnosis helps to ensure proper treatment. Some treatments can prevent symptoms from getting worse and ultimately save lives.

The Marfan Foundation offers a warm and welcoming community for all those affected with the condition.  One of the highlights of the year is always the annual conference, a gathering where more than 500 people with Marfan and related disorders, and their families, have access to the world’s leading medical experts on Marfan syndrome and can meet other people with the condition from all over the country. It’s a life-changing event for all who attend, including the 100+ teens and 100+ children who attend each year. Our next annual conference, which is hosted by Mayo Clinic, is scheduled for August 4-7, in Rochester, MN.

                       Marfan

Throughout the year, we have Walks for Victory that bring our community together in various cities and raise critical funding for our life-saving programs and services. We also offer Regional Symposium, which are a one-day version of our annual conference. In addition, our community groups from coast-to-coast organize group outings, education events, and fundraisers to support the Foundation.

Here are some of the ways in which donations help:

$2,500 enables us to reach 500 people per month, for one year, through monthly webinars featuring leading Marfan syndrome medical experts.

$1,000 enables us to design, print, and disseminate four new fact sheets on quality of life issues that affect people with Marfan syndrome and related disorders

$500 funds a phone support group -- for groups such as parents of affected children, unaffected spouses, or older Marfan population -- for a full year of monthly meetings

$100 enables us to send a packet of information about the signs of Marfan syndrome and related disorders to 10 school nurses

Learn more about Marfan syndrome and The Marfan Foundation at Marfan.org. Donations are always welcome at Marfan.org/Donate.

Photo Credits: Rick Guidotti, Positive Exposure.

 

              MarfanMarfan

        Check out all of the wonderful watches from The Marfan Foundation here!

 


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