Marfan Syndrome Wiki

This is a wiki, which anyone reading this can edit. People in the Marfan community can add their experiences and their knowledge of what it's like to live with the Marfan syndrome.

DISCLAIMER: These pages are created by people who may or may not have any medical training. The editors could be anybody. They may not even have any connection to Marfan whatsoever. Do not take anything as absolute truth. Check with your physician before doing anything crazy.

• How to add or edit a page
• Guidelines for editing

Lifestyle

• Employment
• Exercise
• Gaining weight
• Nutrition
• Self-image
• Shopping for tall people
• Automobiles for tall people

The Marfan community

• Online Marfan communities
• People in the Marfan community Personal sites, blogs, etc.
• Fund-raising in the Marfan community
• NMF conferences
• Your diagnosis group

Managing symptoms

• Reacting to your diagnosis
• Medications Beta blockers, calcium channel blockers, losartan, etc.
• Deciding whether losartan is right for yourself and your family
• Dural ectasia
• Life after spinal fusion
• Preparing for a medical emergency
• Tips for surgeries
• Filing a successful claim for disability income benefits

Dealing with doctors

• Preparing to visit a genetic clinic for initial diagnosis
• How to obtain your complete diagnosis
• Take charge of your health
• Marfan-savvy doctors in, and travel advice for...
  • Baltimore

Miscellaneous

• Marfan in popular culture Books, movies, tv shows, art, songs
• Marfan syndrome links
• Marfman posters and t-shirts!