Katelyn Mallone was diagnosed with a rare neurological dysorder called Cervical Dystonia (also known as Spasmodic Torticollis).  This is my story and here goes...

"I have Cervical Dystonia...but Cervical Dystonia does not have me."

 On October 7th, 2008 (the day before my birthday), I, Katelyn Mallone was diagnosed with Cervical Dystonia.  Just what is Cervical Dystonia???  Well, here's the jist of it.  My neck muscles are too weak and are unable to hold my head up straight so as a result, my head is tilted to one side.  Along with that, my neck muscles are unbearably tight and spasm uncontrollably, causing the upper half of my body to shake (very similar to Parkinson's disease in that respect).  There is a treatment for this disorder...but unfortunately NO KNOWN CURE...yet!!!  The treatment is a Botox (Botulinum Toxin) injection(s) into the tight, spasmed muscles in order for the muscles to relax.  Although this is a treatment, THERE IS NO CURE and I will regularly (every 3-4 months) receive these Botox injections into my neck muscles, as in time, the Botox will eventually wear off.

On Oct. 21st, 2008, I recieved my 1st set of injections. There's really no way to tell how much a person needs as it varies from person to person.  I was given 2.5 ml (more than average treatment) of Botox into my neck muscles.  It takes about 2-4 weeks for the body to respond to these injections.  The injections were EXTREMELY painlful...but was told by my neuurologist that the first set of injections are always the worst.

I am NOW taking things into my own hands and am doing INTENSE physical therapy stretching everyday (60-75 min/day) as well as walking (approx 1/8th of a mile/2-3 times a day).  My body currently is still tilting to one side and it's incredibly challenging for me to walk around.  I'm temporarily disabled for the time being.  My torso has been tilted for SO LONG I have to re-train my body to be straight again. Funny to think that I can't remember what it's feels like to stand up straight...I just don't remember, so I am working at that.

I have to wait approx 3 months before I can receive my next set of Botox injections, and am scheduled to recieve them on Jan 8th, 2009.  I will be receiving approx 3.6 ml of Botox into my neck muscles.  After about 3 weeks, if my body responds adequately, I should show significant improvement.  But unfortunately will have to live with Cervical Dystonia for the rest of my life.

I just want to thank you all for all the prayers and support I have received through this entire ordeal.  You are the true heroes and I am blessed to have wonderful, kind, compassionate and caring people like YOU in my life!  GOD BLESS YOU ALL and please...keep up the prayers! I need all I can get!

Humbly Yours,
~Katelyn Mallone


HELPFUL LINKS:

www.torticollis.org

www.botoxmedical.org