Chiari and Syringomyelia benefit raises nearly $4,000
A few dozen people walked the Sangertown Square Mall in New Hartford on Saturday to raise money and awareness for two rare brain abnormalities. There are no cures for the disorders, only uncomfortable surgical treatments that involve drilling into patients' heads. Our Andrew Sorensen reports on the ailments and what some people are doing to fight them.
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NEW HARTFORD, N.Y. -- Chiari and Syringomyelia only affect about 200,000 people nationwide, but they are troubling conditions.
"Chairi Malformation is where the hind brain settles into the spinal canal and causes a slew of disorders," Walk and Roll Chairperson and Chiari patient Celeste Wilson-Ramseur explained at a benefit Saturday.
"For me: radiating, burning pain in my face and my arms, problems walking and swallowing," Arnold-Chiari patient Pegg Curtacci said about her particular symptoms.
And there is no cure. Wilson-Ramseur organized the Walk and Roll awareness event because it took her so long to find out she had Chiari.
"I've been dealing with it all my life, now it just has a name," she said.
This kind of event can even connect Chiari patients.
"It's been a long journey," Curtacci said.
She has had symptoms since 1995.
"Then it took, four years to get a diagnosis, I had surgery in '98, I did well for six months, went back to work."
When symptoms come back, like Curtacci's did, patients can undergo a procedure that requires a hole be drilled in their skull to relieve the pressure and some of the symptoms.
But not all symptoms can be cured by medicine.
"The thing about the Chiari journey is that it just doesn't affect the person with Chiari, it affects your whole family," Curtacci explained.
Becky Loy, whose 14-year-old son has Chiari, said, "Raising money, doing some of this, giving back to the Chiari community is huge, very important for our family.
This walk, though modest in size, raised almost $4,000, and some awareness.
The walk's organizers say that with more events like this they hope to find a cure, or more effective treatment soon.
You can find more information on Chiari and Syringomyelia on the The American Syringomyelia and Chiari Alliance Project website on www.asap.org.