The Invisible Disease

Having a sick child can be stressful. But having a child with a difficult to diagnose illness can be devastating.

When three year old Isla came to her mother, Amy Ionno-Carper, with a headache, Amy did the same as any caring parent. But when the headaches became more intense and more persistent, Amy became concerned.

For Amy, multiple medical visits finally led to the diagnosis of Chiari Malformation.

Chiari (pronounced key-are-ee) Malformation is often referred to as the invisible disease, and for good reason. There are no outward signs. The most common symptoms are persistent headaches. Some patients can have as many as 200 different symptoms.

The Invisible – and unknown - disease

Not only is Chiari “invisible” but it’s relatively unknown. And there’s no cure. The Chiari and Syringomyelia Foundation is dedicated to education, advocacy and research of this rare disease.

In 2015, thanks to Amy and an army of supporters, the Chiari and Syringomyelia Foundation received a $25,000 State Farm Neighborhood Assist® grant.

Funds from the grant created a lecture series, Consider Chiari, to educate the medical community about the illness. What is known about the disease is understood by a fraction of medical personnel.

Having a confirmed diagnosis is only the beginning for Amy. “I’m just a mom making a change for my child’s future.”