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The Importance Of Awareness

One of the major obstacles that Chiari and syringomyelia patients face is that it seems like no one has heard of the conditions.  Once thought to be rare, MRI's have dramatically increased estimates of the number of people with Chiari (~300,000 in the US).  This lack of awareness creates an additional burden for patients as they try to explain to family members, friends, employers, etc. what they are going through. 

In addition, the lack of general awareness has translated into a lack of research dollars from the US government.  Diseases which affect about the same number of people receive millions of dollars of federal support each and every year.

It's time to raise our voices, raise our profile, and make people aware.
 

Tri-Fold Brochure

This brochure is a great handout, especially in combination with the Awareness Sheets.  If double sided printing is used, it is a single sheet, although it can be printed on two sheets and folded.  The brochure can be printed at home (follow your printer's double sided printing instructions) or taken to a local copy/print shop.  Please note that color printing can be expensive, however the brochure looks good in grayscale, which is much more reasonable.  Also, many print shops have a machine which can do the folding.

Conquer Chiari Brochure

This link is to an Adobe Acrobat PDF file.  If you do not have Adobe Reader (or the latest version), you can get a free copy at www.adobe.com

Awareness Sheets

The Awareness Sheets are one-page, high-level overviews of each condition.  They are meant to give you - the reader - something that can be easily emailed, or printed out and handed to, family members, friends, co-workers, bosses, teachers, principals, dentists, etc. to give them a better idea of what a person with CM/SM is going through. 

Basically, you may use them however you like; send, or pass out, as many as you can to raise awareness and make life just a little bit easier for patients.  Please note, however, if you cut and paste a portion of the document for a different use, please acknowledge the source, including this web site address.

The links below are to Adobe Acrobat PDF files.  If you do not have Adobe Reader (or the latest version), you can get a free copy at www.adobe.com

Chiari Awareness Sheet

Syringomyelia Awareness Sheet

The success of the Awareness Sheets is up to you!  Please send any comments or feedback about the Awareness Sheets to editor@chiari-syringo-news.org

Health Fairs

A great way to spread awareness is at Health Fairs.  Many large companies, and other organizations, put on Health Fairs where pretty much anyone can set up a table, hand out literature, and talk about their experience.

If you hear about a Health Fair in your area and want to participate, simply contact the organizers and get registered.  Let us know about your experience so can pass on and advice for others.

Tips For Talking About Chiari

Talking about Chiari, especially when you've been recently diagnosed can be difficult.  It is an emotional, often overwhelming time, and sometimes it can seem like no one really understands what is going on. 

Although it is difficult, here are some tips for talking about Chiari and syringomyelia:

1. Realize that every person's experience is unique.  Some people will be very empathetic, some will not. However, it is impossible for someone else to really understand at a deep level what you are going through.  Everyone has unique dreams; everyone experiences symptoms differently.  Don't expect too much from people.

2. Research has shown that the majority of people do not know how to respond when discussing a serious illness with someone.  This leads to many people, even close friends and family, saying inappropriate things.  This does not necessarily mean they are not sympathetic and caring, it may just mean they don't know what to say or how to handle their own emotions.

3. Develop different versions of your "story".  Casual co-workers probably don't want to hear about your daily struggles or the details of a surgery.  Many people just want to let you know they're thinking about your by saying, "How are you doing?"  Obviously, close friends and family may want to know more details, but be cognizant of how comfortable someone is in talking about medical details and personal issues. 

4. One way to discuss the topic with someone who knows nothing about it is to start at a high-level and then let them take the lead in determining how much they want to know.  For example, start with, "Chiari is a neurological condition affecting the brain and the top of the spine"  For some people this will be enough.  Others may want to know how it affected you and how it is treated.  Again, let the other person take the lead by asking questions, don't launch into a 20 minute monologue.

5. Even though you are talking about an illness which may have devastated your life, the reality is that people don't respond well to negativity.  When talking about Chiari, it's best to try to keep emotion out of it, the message will get through better. 

6. Avoid medical jargon and don't fall into the doctor trap.  Use plain English, not terms like foramen magnum.

7. Practice makes perfect.  Just like anything, you can get better - and more comfortable - talking about Chiari over time.  Develop your own style and stick with what works.

Do you have suggestions for how to talk about Chiari?  Let us know at editor@chiari-syringo-news.org.

Other Awareness Activities

We are currently planning other Awareness activities, such as presenting at Medical Schools and placing articles in popular magazines and newspapers.

If you have any ideas about how to raise awareness, let us know!