A new nonprofit organization was recently launched in Santa Barbara to educate both the general public and the medical community. The International Chiari Association was created to raise awareness about this little-known and often misdiagnosed illness.

Chiari malformation (pronounced: kee-AR-ee) is a serious neurological disorder — often congenital (present at birth) — where the lower part of the brain, the cerebellum (which controls balance and coordination), descends out of the skull and crowds the spinal cord. This condition puts pressure on both the brain and spine and disrupts the normal flow of cerebrospinal fluid (the clear fluid that bathes the brain and spinal cord).

This causes many symptoms, including headaches (worsened by coughing, sneezing or straining), neck pain, difficulty sleeping, muscle weakness, numbness, unsteady walking, poor hand coordination, slurred speech and blurred vision. As these symptoms are common and could be attributed to any number of diseases, Chiari is often misdiagnosed, or not discovered until MRI testing is ordered.

“Chiari malformation can be overlooked because the majority of symptomatic patients do not have neurological symptoms, only headaches,” Richard Chung, M.D., neurosurgeon in the Santa Barbara Neuroscience Institute at Cottage Health System wrote in a recent article published in NeuroTransmitter magazine. “Headaches are so common in the general population that many patients have undergone extensive treatments for other common conditions such as migraine or tension-type headaches before an imaging study is eventually done.”

This was precisely the case with ICA founder and president Pete Dal Bello. Dal Bello was born with Chiari malformation, yet it took 36 years before he was diagnosed. In 2000, in failing health, Dal Bello was forced to resign from his position as a magazine editor. Thus began an eight-year journey in search of a diagnosis. Dal Bello went from doctor to doctor, receiving incorrect diagnoses ranging from fibromyalgia to chronic fatigue syndrome to depression, or worse yet, sometimes his concerns were not taken seriously.

Finally, an MRI revealed Chiari malformation. Ultimately landing at UCLA Medical Center for treatment, Dal Bello underwent major neurosurgery on May 11, 2009. Had this discovery not been made, Dal Bello would have lived the rest of his life in a wheelchair. Today, Dal Bello is energized by the creation of the ICA, yet continues to struggle with his illness.

“We can’t change the past, but we can make things better for the future,” Dal Bello said. “The ICA exists to help those with Chiari and the people that care about them. Every day, I think about these brave individuals — especially the young children, many of whom have had more surgeries than years of life. I want their future to be better than my own.”

As Dal Bello’s story illustrates, there is a shocking lack of awareness within the medical community about Chiari malformation. Until recent years, Chiari was considered a rare condition with patients going five or more years without being diagnosed. With the increased availability of MRIs, the number of reported cases has risen sharply. While it is estimated that 200,000 to 2 million people have Chiari in the United States, most doctors and nurses have never heard of the disorder.

“Since this disorder is not well-known, there are not many resources available,” Dal Bello said. “The ICA wants to change that. I firmly believe that we can make great strides in Chiari awareness and research, both in the United States and abroad, in a short period of time.”

You can support the ICA either online via the ICA’s website or by mailing a donation to ICA, c/o Robert Mislang, Vice President/Senior Branch Manager, Montecito Bank & Trust, 1106 Coast Village Road, Suite A, Santa Barbara, CA 93108.

— Joni Kelly is a publicist representing the International Chiari Association.