About Chiari People
Chiari People was formed in 2004 to address the painful and debilitating structural conditions of Chiari 1 Malformation while providing support and encouragement to help people stricken with Chiari achieve their full potential. Many doctors and most nurses have yet to hear of Chiari. We hope to help educate our community about Chiari Malformation and the devastating disorders associated with it.
Start your own support group
Starting a state or local support group is an easy decision, if the need is there, and there are patients with questions and fears, then there should be a support group. When we realized that there were two of us in the same family “living” with this disease, we had to wonder if there were more of us in our state, but how could we find out? The doctors couldn’t tell us, HIPAA Laws prevent them from sharing any information, so we were on our own. We knew that a friend of ours wrote the medical and miracle stories for our local newspaper, so we gave her a call and explained what we were trying to do---see if there were any others who had this same condition who might want to talk to us about it. So we did an interview and they took a few photos of Jade and myself, and we waited to see if the editor would like the story our writer had submitted, and we waited some more.
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I think it was two months later that our story landed in the
paper, on the front page!! Jade had just undergone her first
major surgery and we had brought her home from the hospital when the
phone started ringing; more than three years later, it has never
stopped. Finding such a need drove us to start what we thought was going
to be a small support group (5 patients at the most is what we planned
for—after all, Chiari is in the “rare disease” category, how many could
there possibly be?). The population of our state, Montana, is less than
100,000, so there really couldn’t be more than 5 of us, right? I thought
it was a fluke that two of the patients were in our family…..that is how
much I knew at that time. Today, there are 4 confirmed Chiari cases in
our immediate family alone, we practically blew that “rare disease”
thing right out the window for our state alone.
We picked a date and we started our support group with 5 patients, in a backroom at a local restaurant. It was noisy, and some people wanted to eat, some people didn’t. After only two meetings I knew that this wasn’t going to work for us. I began to look for alternative places to meet, someplace quiet so it wouldn’t put the patients' symptoms over the edge. The public library seemed like the best, quietest idea, so I contacted them and waited for their people to consider our request, and we waited some more. In the meantime, someone mentioned that the hospitals usually have conference rooms available, so I also contacted them. At that time, no one I talked to had ever heard of Chiari, so I told my story walking a million times (and I continue to do so).
We were granted the use of an old conference room at the local Catholic Hospital, St. Vincent’s, with no charge. I went onto the American Syringomyelia Alliance Project website, www.asap.org and ordered a bunch of their medical conference tapes to show at our meetings. If I needed a DVD/VCR and screen, the Audio/Visual folks would set one up for me, all I had to do was ask. We couldn’t have asked for a more gracious space or better accommodations, and that took a lot of the burden off, just knowing we had a place to meet. We booked that room for an entire year ahead of time, which was a step of faith for us. Even though we sometimes weren’t sure anyone was coming, Jade and I were there every time, and we never, ever sat alone, someone always showed up and wanted to talk, or cry. I have never gone home sorry that I committed to that time and followed through, there is always a need somewhere, with someone.
Jade and I spent a month putting together a brochure, and we went to the local print shop and printed up 25; those 25 were gone in a flash, so we went back and printed up 100. Today, we have printed thousands of our brochures and they have been sent all over the world. We designed a little newsletter and mailed that out to everyone we could think of who may need to know about Chiari; we knew that many would be tossed in the trash, but we didn’t care, if one got into the hands of a suffering patient, it was worth the cost. Since we had no funding, we spent our grocery money on printing costs and postage; eventually, patients, family members and friends would step forward and pledge financial help or make small donations.
Today, we have an average of 30 people at our monthly meetings; we have become a close-knit group of friends. The support, encouragement and camaraderie we get from our group could not be exactly duplicated with any other group of friends, only a person with Chiari can really know your struggles. However, having Chiari has also made each of us more keenly aware of the many, many others who are suffering from other chronic pain syndromes and the daunting tasks each patient may face just to get through one day.