Telling a Friend or Relative


Having Chiari obviously changes your life. While no one suffers more than the Chiarian, it also affects those around you. Your family and friends will suffer along with you, so be grateful for the loved ones who remain by your side.

Most Chiarians typically experience symptoms for years before being diagnosed. It is also very common for Chiarians to be misdiagnosed or told outright by doctors that there is nothing wrong with them. Many Chiarians, myself included, were relieved to find out that this wasn't all in our heads. We only wish that we didn't have to go years, or even decades (for me, it was 36 years), before finally finding out that we have Chiari.

The best thing to do is face Chiari head on, so do your research. Knowledge is power and the more you know, the easier it will be to talk to your doctor about Chiari as well as answering any questions that come your way from friends and family. Spend some time studying this site, along with our Facebook page and view the videos on the International Chiari Association Network (ICAN). Our web site also includes such things as "Preparing for Your Appointment" and a "Doctor Directory" to assist you.

When the time comes to tell a friend or family member about your Chiari, try not to get too in depth with your answers at first. You can simply say, "Chiari is a serious neurological disorder that affects the rear portion of the brain called the cerebellum."

If they have a difficult time pronouncing Chiari, a good way to get them to remember the proper pronunciation is to tell them it sounds like a key you put in a lock with an R-E on the end, "Key-R-E."

For most people, a simple, direct answer will satisfy their curiosity. If you are asked to explain further, you can point to the back of your head and say, "The back of my skull is too small for my cerebellum so the pressure forces part of it down into my spinal canal. This causes terrible headaches along with many other problems." You may or may not want to go into detail about your symptoms at this point, it's up to you.

If asked about how Chiari is treated you can say, "It depends on the severity of the symptoms, but in many cases a surgery is performed where the doctor removes a quarter-size piece of the back of the skull and the back of C1, the top vertebra. This is done to relieve the pressure on the cerebellum. The goal is to halt further progression of the symptoms and hopefully relieve many of them."

A frequently asked question is, "What causes Chiari?"

At this point, doctors aren't sure. Chiari is such a little-known disorder that there hasn't been enough research done yet to know what causes it. There is also no cure.

Another frequently asked question is, "How many people have Chiari?"

There are roughly 300,000 people diagnosed with Chiari in the United States, although that statistic may not accurately reflect the true number of Chiarians in our country. As more doctors become aware of Chiari and access to MRIs become more readily available, we believe that the number will rise. Chiari is seen around the globe, so most likely there are millions of Chiarians worldwide.

Another statistic to note is that females are affected three times more often than males.

Remember, many doctors and nurses have never heard of Chiari so don't expect non-medical people to have any understanding of this disorder. By keeping your descriptions simple and brief you can usually answer people's questions without a lot of confusion. If you can manage to communicate the proper pronounciation along with a brief explanation of Chiari to another person, then you have made talking about your Chiari an easy task and have efficiently spread Chiari Awareness.

Pete Dal Bello is the founder and president of the International Chiari Association (ICA). Jason Floyd is the secretary of the ICA. Dal Bello has Chiari.

(c) 2012 International Chiari Association (ICA).
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