Chiarians Unite

Paying it forward ... One family at a time!

FACES of CHIARI, SYRINGOMYELIA, HDCT, etc
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Some of us sport hardware (wheelchairs, braces, etc) but most of us don’t. We look like everyone else. This is what they call an invisible disability – There is no outward sign saying we are in pain.

Chiari pain is often chronic, and for some of us it is acute chronic pain. There is no magic pill to take to make the pain go away, yet we trudge forward each day choosing to smile and laugh even though we want to scream out in pain. Over time, we learn to go forward as life doesn’t stop even when we wish it would for a moment. We make choices every day of what we can and cannot do. Sometimes, our choice is to do something we know we will pay for dearly later … but we do it anyway just for the experience of enjoyment, if only for a short time.

Some Chiarians are lucky enough that surgery works to eliminate the pain (very small percentage) … For most of us, pain is reduced to a more tolerable level … While others find no relief at all. Doctors are too fearful of the "prescription abuse" stigma, so few of us truly find any relief. We are stuck in a world full of pain and frustration with no end in sight … and yet in the photos below you will see us SMILE!

So the next time you see one of us, please understand the energy it takes to smile, laugh, and PRETEND life is normal, when in fact, most of us want to curl up in a bed and cry!

If you want your photo added to the "Faces of..." page, please send the following information to info@chiariansunite.org:
First name or initials (if you prefer)
Diagnosed Conditions
Add something along the lines of ... I want you to place my (or my child's) photograph in the photo gallery under "Faces of..." page.
Thank you for your help, support, & continued patience over the past few weeks during our renovation!
In the spirit of paying it forward,
The Chiarians Unite Staff

2 Albums

Recently Added | Most Commented

Hereditary Disorders of the Connective Tissue

Hereditary Disorders of the Connective Tissue
22 Photos | Updated Jul 23, 2009
by Nicole Hutnik

Faces of ...

Faces of ...
14 Photos | Updated Jul 23, 2009
by Nicole Hutnik

1 - 2 of 2 Albums

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Disclaimer Updated All correspondence and information on this site should not be considered, or in lieu of, medical advice, diagnosis, or treatment from a qualified physician, surgeon, or health care provider. Chiarians Unite, their representatives and services, does not constitute the practice of medical, nursing or other professional health care advice, diagnosis or treatment. Chiarians Unite Staff, Representatives, Consultants, etc. (herein referred to as Chiarians Unite Staff) are patients and/or parents of patients with Chiari Malformation and/or Related Disorders. Chiarians Unite Staff cannot give medical advice nor suggest where you should seek medical attention. Chiarians Unite Staff can only tell you where they and their families seek assistance if they so choose. They are not medical professionals of any kind. Please be advised that nothing found here has necessarily been reviewed by professionals with the expertise required to provide you with complete, accurate or reliable information. That is not to say that you will not find valuable and accurate information here. Chiarians Unite CANNOT guarantee the validity of the information found here. The content of any given article may recently have been changed, vandalized or altered by someone whose opinion does not correspond with the state of knowledge in the relevant fields. We advise everyone to seek the advice of a physician or other qualified health care provider with any questions regarding personal health or medical conditions. Never disregard, avoid or delay in obtaining medical advice from your doctor or other qualified health care provider because of something you have read in an email or on-line. If you have, or suspect that you have, a medical problem or condition, please contact a qualified health care professional immediately. If you are in the United States and are experiencing a medical emergency, please dial 911 to call for emergency medical help on the nearest telephone. ChiariansUnite©2007 PURPLE for Chiari Awareness