|
|
|
Living with Marfans
|
 |
| |
FACTS THAT I HAVE LEARNED:
Through my research that I have done over the last 8 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 of the body.
-
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.
-
Marfans is a degenerative condition. We don't age well.
-
Joint laxity brings on Osteoporosis.
-
Difficulty for tissues to heal and rebound.
-
Joint hypermobility causes tissue fragility. Hypermobility syndrome is linked to Marfans. (benign joints)
-
Dural estacia 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 aortic surgery will have other surgeries on the aorta.
|
|
|
|
|
