Saturday, September 21, 2013

Crush Chiari, Not Candy!!


I have talked so many times about raising money for Syringomyelia and Chiari awareness and yet never have…until this September during Chiari Awareness month. I decided I wanted to put my money where my mouth was and donate my money and time to an amazing cause and spread the word about these neurological conditions.


If you wish to donate, please visit: http://csf.kintera.org/crushchiari/mistihair

For those of you visiting my blog for the first time, I wanted to share some facts with you about Chiari and Syringomyelia so you have some understanding of what people like me go through daily. Many of us with the condition are unable to have any treatment besides pain management (which doesn't always work). I am not a candidate for the decompression surgery for Chiari (where they remove a portion of your skull to release the pressure) or a shunt for Syringomyelia (where they drain the fluid out of the syrinx [cyst] inside the spinal cord).

About Chiari:
Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. 1 in every 1,000 will be diagnosed with a form of Chiari Malformation.

Symptoms of Chiari Malformation include:
Neck pain; Unsteady gait (problems with balance); Poor hand coordination (fine motor skills); Numbness and tingling of the hands and feet; Dizziness; Difficulty swallowing, sometimes accompanied by gagging, choking and vomiting; Vision problems (blurred or double vision); Speech problems, such as hoarseness; Ringing or buzzing in the ears (tinnitus); Weakness; Slow heart rhythm; Curvature of the spine (scoliosis) related to spinal cord impairment; Abnormal breathing, such as central sleep apnea, characterized by periods of breathing cessation during sleep; and several other symptoms.



About Syringomyelia:
Syringomyelia( sih-ring-go-my-E-lee-uh) is the development of a fluid-filled cyst (syrinx) within your spinal cord. Over time, the cyst may enlarge, damaging your spinal cord and causing pain, weakness and stiffness, among other symptoms. 8 in every100,000 will be diagnosed with Syringomyelia.

Symptoms of Syringomyelia:
Muscle weakness and wasting (atrophy); Loss of reflexes; Loss of sensitivity to pain and temperature; Stiffness in your back, shoulders, arms and legs; Pain in your neck, arms and back; Bowel and bladder function problems; Muscle weakness and spasms in your legs; Facial pain or numbness; Spinal curvature (scoliosis); Numbness and tingling; Spasticity; Paralysis (in severe cases, quadriplegia).



You can find more information by visiting: www.csfinfo.org and www.ASAP.org. As I stated earlier, not all of us are able to have treatment besides pain management. I firmly believe that the money we are able to raise in the Crush Chiari campaign will go to fund research and awareness for doctors and scientists. 

For those of you who have already helped me by putting a jar in your business, donating from your own pocket, or helping me spread the word...please know I am so grateful for you and your help! If you cannot afford to donate, please help me spread awareness. I could really use your help in spreading the word! 

Again, if you wish to donate, please visit: http://csf.kintera.org/crushchiari/mistihair


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