June 20, 2006 --

As we head into the summer break (there is no July issue of Chiari & Syringomyelia News, but we will be hard at work), I wanted to convey some of my recent, and completely unscientific, observations which lead me to believe that things are getting better and there are many reasons for hope.

1. More and earlier diagnoses.  In just the past couple of weeks, I have bumped into several people (not in the course of my Conquer Chiari work) for whom Chiari had affected them or their direct families.  While it may just be a statistical fluke, I don't think it is.  Eight years ago when I was diagnosed, it seemed like there were very few Chiari people out there.  Now, when I talk to people who are newly diagnosed, I hear things like, "I had never heard of it, but when I started asking around I found several friends or family members who knew someone."  I also think Chiari is being diagnosed earlier.  Lately, I have heard what once I would have considered amazing stories.  Pediatricians identifying Chiari from unusual scoliosis.  Primary care doctors realizing something is wrong and starting patients on the path to an accurate diagnosis.  While much work remains, I think there is definitely a positive trend in the area of diagnosis.

2. More awareness.  Again I didn't calculate the numbers, but it's my impression that Chiari is getting a lot more attention from the media than it used to.  While the stories are not always accurate (in fact rarely so), I do track when Chiari and syringomyelia are mentioned in newspapers, etc., and it is definitely getting more press.

3. Better outcomes.  In talking with neurosurgeons, I hear that many are seeing better outcomes as the operative techniques become more refined and more surgeons gain experience.  This is not to minimize the work that remains in this area, many patients end up with permanent deficits and multiple surgeries, but at the same time, it is important to balance this with a recognition of successful outcomes.

4. Research continues to advance.  While the amount of Chiari research continues to lag far behind comparable disease, advances in understanding continue nonetheless.  It appears that we are on the verge of redefining what Chiari really is, and with that, hopefully will come improved treatments.

5. More information is available.  I saw a great post on a non-Chiari message board a couple of weeks ago.  A newly diagnosed patient was told by someone else that while Chiari was serious, there was a lot of information about it available on the web.  This was definitely not the case 5 years ago, and represents a significant advance in our fight against Chiari.

I don't mean to imply that everything is wine and roses, far from it.  Chiari is still not well understood and can devastate people's lives.  Most physicians have not heard of it and there is not a widely accepted standard of care.  However, I do feel like we have taken the first steps on the path to change, and I like to think that Conquer Chiari has played a role through our efforts to educate patients and the medical community.

The power of technology to spread education and awareness is staggering.  Consider the following statistics (the following refer to the Conquer Chiari site from its inception):

• 200,000 unique people have visited the site

• More than 2.6 MILLION pages of information have been viewed

• The Overview presentation has been viewed more than 50,000 times

• The FAQ has been viewed more than 37.000 times

• The Awareness and Education sheets have been downloaded more than 40,000 times

• The most popular C&S News article has been read more than 30,000 times

While it's certainly a good start, it is only a start and as I said earlier much work remains.  This summer we will be reviewing the research proposals (I'm already excited by the quality of what we're getting in) and launching a project to add more rich media to the website.

I hope everyone has a safe and happy summer.  See you in August.

-- Rick Labuda

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