Like many people, I paid no attention to a medical issue until it affected someone in my family.

My granddaughter, Megan, now 11, was diagnosed with Chiari Malformation when she was seven.  I was totally confused.   I had never heard of it.  I had to be told to pronounce it “key-ari.”

My reason for writing this is because Megan’s parents got help for her, and I want to help educate the public and particularly parents about this recently-diagnosed disorder.    Because Megan got help, she plays Lacrosse and soccer, swims on the community pool team, just won a $1000 college scholarship and has a leading role in her fifth grade production of “Oliver”.   

Yes, I’m a bragging grandma, but it’s so important to know there is help and hope, so that more Megans can lead normal active lives.

In layman’s terms, which is the only way I can understand it, Chiari Malformation is a serious neurological disorder where the cerebellum descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine.  Various symptoms occur – severe head aches, back problems and Scoliosis (curvature of the spine).  The bracelets we wear say “Conquer Chiari, Live Pain Free.” Megan  developed Scoliosis at seven,  very unusual in someone her age and that’s when tests indicated Chiari.      

 Until the technology of the MRI was developed, no complete diagnosis or surgical procedure  was possible.  That’s why many adults are just now finding  that the pain they have suffered for years was Chiari.  In fact, some 300,000 children and adults are affected by Chiari (the name refers  to a Dr. Chiari, who devised the first surgery).

Dr Ben Carson at Johns Hopkins, a medical celebrity for his “gifted hands” (the name of his autobiography), operated on Megan twice, once to correct the malformation and a year later to remove scar tissue.  She has avoided further surgery and her Scoliosis is improving.  Some children have numerous surgeries.  

Another surgeon of equal reputation is Dr. Robert Keating at Children’s Hospital in Washington.  

Someone anxious to spread the word is Rick Labuda, a patient himself and founder of Conquer Chiari - an information and clearing house web site about Chiari.   Money and publicity are desperately needed for ongoing research.  Other surgical procedures may be developed as well as other treatments.

Each year more and more events and meetings are being held.  Last September a nationwide Walk Across America for Chiari occurred, preceded by a banquet in Washington.   We went to the walk held in this area at a park in Leesburg.  I was amazed at the number of children and adults there.  Many families had never had the opportunity to share their stories with each other.  It was an emotional and inspiring day – and there were even lots of smiles from these courageous children and grownups.

The next Walk Across America will be September 18 this year.  For more information, start with the web site Conquer Chiari.

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