Living With Marfans

FACTS THAT I HAVE LEARNED:

Through my research that I have done over the last 16 years, there are certain tests that can be done to evaluate many of my symptoms. Most of the tests that I had in the past do not relate to Marfan symptoms and the normal readings that have been received only address the average person not one with Marfans.

The following is a listing, in outline form, of Marfan facts that relate to the syndrome and symptoms I experience, along with analysis and possible causes. I also am going to provide a list of tests that I have had as well as tests I most likely should take in the near future.

  • Marfans is a connective tissue disorder. Connective tissue is located in all organs and systems of our bodies.
  • Specific areas that are affected are: the bones, the ligaments, the eyes, the heart, the blood vessels, the lungs, the fibrous membrane covering the brain, and the spinal cord.
  • Connective tissue is weaker in Marfans people and other related disorders. (such as Loeys-Dietz and Ehlers-Danlos Syndromes)
  • Marfans is a degenerative condition. We don't age well. (Now that we are living longer due to advanced testing, medications and surgeries, research is needed on raising the quality of life.)
  • Joint laxity brings on Osteopenia and Osteoporosis. (it is also seen at much younger ages than the general population.)
  • Difficulty for tissues to heal and rebound.
  • Joint hypermobility causes tissue fragility. Hypermobility syndrome is linked to Marfans and related connective tissue disorders. (benign joints)
  • Dural ectasia is present in a large percentage of Marfans people (even without back pain. More severe with age (36+).
  • Scoliosis found in large percentage of Marfans people. Ranges from 20 degree and greater.
  • A significant number of Marfans people who have had aortic surgery can have a higher rate of other surgeries on the aorta.