NORTHFORD, Conn. (WTNH) -- A controversial approach to treating multiple sclerosis is now gaining widespread attention. And a small group of Connecticut women diagnosed with MS had a part in it.
Jennine Kelley has multiple sclerosis, an often disabling chronic disease that affects the brain and spinal cord.
"I started to lose the ability to speak clearly and then I started to lose the ability to use my right hand," Kelley said.
Debilitating headaches led to more research, specifically to a novel procedure: Chronic Cerebrospinal Venous Insufficiency or CCSVI.
And Joan Beal says, "I wrote about it online. And then other people found out about it."
Beal's husband has MS and underwent CCSVI, which was first performed overseas. It gets blood flowing to the brain by using a balloon to open blocked jugular veins.
Beal explains, "if you have slowed blood flow going through your brain, you're going to suffer for it."
MS symptoms like heat fatigue disappeared. That convinced Kelley to follow suit.
Kelley says her doctor, "found both my jugular veins had stenosis on both sides. And then where he found the stenosis, he ballooned it open. Since I had the procedure, I haven't had the headaches."
Since then she and several other women with MS in Connecticut, who also had the procedure done, have formed CCSVI Alliance .
They want to raise awareness of it's link to MS.
"I felt the risks of doing the procedure were less than the risk of taking some of the medicines that I had been on."
However, it is controversial.
Many experts in the field have not embraced it saying, there's no basis for it.
Studies are underway.
"We need research and time to tell people how much of a connection and what it all means."
The MS Society has funded research into the effectiveness of the procedure.
This Saturday, the CCSVI Alliance is hosting it's first fundraiser in North Branford.
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