Hello everyone. As most of you know or may not know, at the age of 10 1/2, I got sick. It wasn't until nearly 18 years later that I found a neurologist who took my case to heart. She diagnosed me with dystonia, a rare neurological movement disorder. I have been doing well - One of my favorite mottos - "It is what it is". I did have a pretty hard time in 2006-2007. After trying several medicines, I found one that is actually helping me. I still have troubles now and then but overall I'm doing well. Positive energy helps.
Neither my family nor I had ever heard anything about dystonia until I was diagnosed. We'd do research online, get information from my doctors and we would learn what we could.
Then on July 22nd 2009, my eyes were opened during Dystonia Twitter Awareness Day. I didn't know what to say or even where to begin. I knew many people had it but didn't know to what degree until I got to visit with them via Twitter. It was very inspiring to meet others with dystonia. Some have it the same as I do; some are much worse and in chronic pain 24/7. It was eye-opening for me and quite interesting. What was really reiterated that day - we may have dystonia, but dystonia does not have us - and it doesn't have me.
I've decided to do something to not only raise awareness but to also help. I've started to learn more about dystonia through the Dystonia Dialogue, sharing information about dystonia, answering questions people may ask when they see me in my DMRF tshirt. I've also started a blog and have begun to actively talk about dystonia on Twitter and Facebook. Why am I doing all of this? To help people become more aware of dystonia.
I want to ask you to consider making a contribution in support of the Dystonia Medical Research Foundation (DMRF). They do a lot for the dystonia community.
Hope this link opens for you. If not, let me know. Click here:
Please don't feel obligated to send money - just trying to raise awareness and help DMRF. Feel free to pass this on to others if you wish.
If you choose to send money either by check or credit card, know you are indeed helping the DMRF. With your help and support, maybe one day the word 'dystonia' won't be so foreign.
Thank you for your time,