educate people, help save lives, and improving the quality of life for individuals and families affected by the Marfan syndrome and related disorders.
The Marfan syndrome is a heritable condition that affects the connective tissue. The primary purpose of connective tissue is to hold the body together and provide a framework for growth and development. In the Marfan syndrome, the connective tissue is defective and does not act as it should. Because connective tissue is found throughout the body, the Marfan syndrome can affect many body systems, including the skeleton, eyes, heart and blood vessels, nervous system, skin and lungs.
On the 16th of May 2007, My brother Gordon died suddenly of an undetected aortic aneurysm, thought to have been caused by Marfans. Gordon had not previously been diagnosed with Marfans, as he did not present any of the typical signs common with marfans sufferers apart from his height.(He was 7ft tall)
Better understanding and education is needed to encourage those at risk to get screened for the disorder before any potential problems become fatal.
Please check out www.Marfan.org for more information
1. Educating patients, family members and the health care community about the syndrome
2. Advocating and funding clinical and molecular research into the syndrome’s detection and treatment.
3. Providing national support services and a network of local and special interest support groups for patients and relatives to share experiences and imp