Site's on Syringo, Chiari and Ehlers-Danlos Syndrome

http://www.ninds.nih.gov/disorders/syringomyelia/syringomyelia.htm#Is_there_any_treatment

http://www.medhelp.org/posts/Chiari-Malformation/Function-of-Cerebellar-Tonsils/show/974491

http://www.asap.org/handbook.pdf

http://www.rarediseases.org/rare-disease-information/rare-diseases

http://www.arachnoiditis.info/website_captures/syringomyelia_copyfromweb.htm

http://www.webmd.com/brain/chiari-malformation-symptoms-types-treatment

http://www.ednf.org/index.php?option=com_content&task=view&id=1446&Itemid=88889040

www.smawareness.ca

 

If you do not know what these diseases and hear someone has or suffering from them ask questions, do not judge. Syringo affects different parts of the patients body depending on where their located in their spinal cord, Doctors automatically jump to, "if your legs are having symptoms issues have to be in the lumbar spine." THIS IS FURTHEST from the truth. I have 2 syrinx's in the thoracic spinal cord and my chest and BOTH legs are affected. You can have issues in the cervical and legs be affected!!! If your dr says that cannot be tell them they are wrong!!! Not alot of neurologists or neurosurgeons are fully aware of these diseases so you need to do research.

If ANYONE needs help with these diseases and information let me know. Also I have information on pages on facebook for support from other patients, organizations you name it.

Also the biggest thing I want to say here:   If you see someone no matter their age with a handicap plate or parking permit for parking in handicap place do not jump to conclusions or go off. I am 37y/o and have one because of falling, inability to feel legs and use of walker the majority of the time. NOT ALL DISEASES and DISABILITIES ARE VISIBLE!!