Marfan Syndrome
People with Marfan syndrome tend to have excessively long bones and are commonly thin, with long, "spider-like" fingers. Other problems include skeletal malformations, abnormal position of the lens of the eye, and enlargement at the beginning part of the aorta, the major vessel carrying blood away from the heart. If left untreated, an enlarged aorta can lead to hemorrhage and even death. This disorder results from mutations in the gene that makes fibrillin-1, a protein important to connective tissue.
Links to Marfan Syndrome
- National Marfan Foundation
- Overview of Marfan Syndrome with graphics
- Stanford University Marfan Center
- Marfan Syndrome - Does diet play a role
- Marfan List: Get in touch with the local NMF Chapter (CH), Support Group (SG), Local Network (LN), or Telephone Support Volunteer (TS). Chapters and support groups hold periodic meetings, often featuring a speaker addressing the concerns of individuals and families affected by the Marfan syndrome. Local Networks are more informal and usually center on social gatherings. Telephone Support Volunteers are people in local communities who are affected by the Marfan syndrome in some way--either they are affected, or a family members is affected-- and they are able to listen to your concerns about the disorder and share resources by telephone or email.
- Marfan Syndrome Reference Page: includes links, organizations, support groups, information and more
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