What would you do if you were told you needed brain surgery and you may not be better when it was over? That is the reality for the millions of families affected by Chiari malformation, syringomyelia and related disorders.
A local unite@night walk will be held at 7:00 p.m. on Sunday, Sept. 1, at Lancaster Christian School to raise awareness and critical funds for education and research efforts.
Chiari I malformation is a congenital or acquired (rare) malformation in which the back compartment of the skull is too small, resulting in crowding of neurological tissues.
Syringomyelia occurs when a cavity, or “syrinx”, is formed inside the spinal cord from fluid build-up. They have many related disorders like dysautonomia, which is a malfunction of the autonomic nervous system, and Ehlers-Danlos syndrome which is caused by dysfunction of connective tissues.
These conditions can cause chronic, debilitating pain and other symptoms that stump even the best doctor. What’s worse? There is no cure for either.
“These disorders are complex and there is no medical consensus on diagnosis or treatment,” said Dorothy Poppe, Executive Director of the Bobby Jones Chiari & Syringomyelia Foundation (BobbyJonesCSF). “Patients are forced to be their own advocates, which is exhausting. That’s why unite@night is so important: it brings families together to let them know they are not alone.”
This walk will raise awareness and fund educational lectures and research projects. Previous walks have funded over 300 lectures for families and the medical community around the country. Lectures have been accessed by over 3 million people. Past walks have also funded almost a million dollars in research projects that will one day lead to a cure.
For more information, or to register for the walk, visit: https://www.classy.org/event/2019-mount-carmel-il-chiari-syringomyelia-and-ehlers-danlos-syndrome-unite-night-walk/e225995
You can also contact Mount Carmel Chapter Representative Jerri Walston directly at 618-263-8801.