MarfanLife.net | News blog

Hampton Union Community News: A balancing act
Sara Gangai of Hampton has something in common with Abraham Lincoln, the composer Rachmaninoff and Mary Queen of Scots. Gangai has a genetic disorder called Marfan syndrome.

The Seriousness Of Sudden Death In Athletes
- The thought of an athlete dropping dead in the midst of a sporting event strikes fear in the heart of all sports enthusiasts.

We have all heard the stories of athletes such as famed college basketball star Hank Gathers who died during at the peak of his athletic career. The question is were there any warning signs or was there something that could have been done to prevent this senseless death?

Welcome To The Tony B Fund
Tony has recently undergone emergencyheart surgery to replace his ascending aorta. He had been working in construction and was not offered health insurance, hence his extreme medical expenses are not covered. Therefore, he could use all the help he can get right now. Although Tony has not publicized his personal ordeal, we feel it’s important to make others aware of his situation.

[I found this website while surfing My Space. Thought people might want to check it out. -Jeanette]

HealthNewsDigest.com : National Marfan Foundation Offers New Booklet for Teens with Marfan
PORT WASHINGTON, NY, December 2006 — Relationships and dating…. Participating in sports….Maintaining a positive self-image… These are all important concerns for any teenager, but for adolescents with Marfan syndrome, a potentially life-threatening genetic disorder of connective tissue, these problems associated with the teen years are often magnified. To help teenagers with Marfan syndrome address normal teen-age concerns, the National Marfan Foundation now offers a free booklet, Marfan Syndrome: A Guide for Teens.

HealthNewsDigest.com
PORT WASHINGTON, NY, December 2006 — Relationships and dating…. Participating in sports….Maintaining a positive self-image… These are all important concerns for any teenager, but for adolescents with Marfan syndrome, a potentially life-threatening genetic disorder of connective tissue, these problems associated with the teen years are often magnified. To help teenagers with Marfan syndrome address normal teen-age concerns, the National Marfan Foundation now offers a free booklet, Marfan Syndrome: A Guide for Teens.

Aortic Regurgitation - Health
The aorta is the main blood vessel through which oxygenated blood passes from the heart to the body. In aortic regurgitation (also known as aortic insufficiency), the walls of the aortic are weakened, causing them to stretch or balloon out under the pressure of blood as it’s pumped from the heart. If the condition occurs in the portion of the aorta leading from the heart, it is called an aortic root aneurysm.

Surgery helps family fight heart defects
Jenifer Vasquez-Aguirre, 20, stands 6 feet tall and has long fingers and a long torso. Her chest bears freshly-healed scars.

All are marks of Marfan syndrome, an incurable genetic disorder that took her father’s life when he was 21, required heart surgery for a brother and sent her to St. Joseph’s Hospital and Medical Center in Phoenix last month with severe chest pains and breathing difficulties.

WVU :: School of Medicine :: Occupational Therapy : Issues associated with quality of life among persons with Marfan syndrome

The purpose of this study is to assess and gain insight into how quality of life is affected by Marfan syndrome. To be eligible as a participant of this study, individuals must be 18 years or older and be diagnosed with Marfan syndrome.

Teen needs to talk to doctor about playing sports
We just found out that our 16-year-old son has Marfan syndrome. We took him to see a cardiologist, who told him that he cannot do any strenuous type activities or sports. Do you think he should stop playing sports?