LOUISVILLE, Ky. (WHAS11) – It’s a real life story, a story that hits home for many families across the nation at unexpected times. It is a serious neurological disorder that many people live with and this disorder could go undetected for years, it is known as Chiari Malformation.
For 32 year-old Rachelle Hair this was not just a serious neurological disorder, this was a life changing event for both her and her family. “I suffered with symptoms for a year before diagnosis” Hair said.
The symptoms she suffered from included head pain upon bending over, sneezing, coughing, laughing, straining, and even cheering too loudly at her children's sporting events.
“I also suffered from numbness to my extremities that became more frequent and worse as time went on” Hair said. Those symptoms didn’t add up to Rachelle and were over looked, who knew that she was born with Chiari Malformation.
Chiari affects the cerebellum, were the bottom part of the brain herniates down into the spinal column. This herniation puts pressure on the brain and spine, it causes blockage of cerebral spinal fluid flow.
Chiari can affect men, women, and children of all ages. Some people go without symptoms while others live daily with debilitating pain.
Symptoms may include severe headache, neck pain, dizziness, vertigo, disequilibrium, visual disturbances, ringing in the ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue and painful tingling of the hands and feet.
“After diagnosis by MRI, I was referred to a neurosurgeon who immediately scheduled my decompression surgery. My surgery involved removal of a piece of my skull and removal of part of my first vertebrae” Hair told WHAS11.
Though surgery only relieves some of the symptoms and tries to prevent other neurological damage, there is no current cure for Chaiari.
“I was lucky to have great support from my family and friends. I also found support from a local Louisville support group called Kares 4 Chiari.” Hair said.
Kares 4 Chiari was founded by Cris Miller whose daughter also suffers from the serious neurological disorder.
Rachelle found strength and hope after attending her local support group meetings. It helped her answer many unanswered questions about the disorder and opened her eyes to many other patients living with Chiari in the Louisville area. She now knew she wasn’t alone.
With Rachelle’s passion and quest to conquer Chiari she wants not only her friends and family to be aware of this disorder but the community as a whole.
You may join Rachelle and her support group at “The Conquer Chiari Walk” Saturday September 22, at Waterfront Park. The walk is a 5K with a run option. Registration starts at 5:00 p.m. and the walk starts at 6:00 p.m.
To learn more information on Chiari and “The Conquer Chiari Walk” click here.