When I started my blog, I wasn’t sure what I was doing. I liked to paint and do crafts, so I thought that I would throw up some tutorials. So, I really didn’t know what I was doing at all, but I did know that I wanted to raise awareness for Cervical Dystonia.
Not only have people contacted me to thank me for bringing awareness to something they don’t know about, recently, I received several touching emails from other people who suffer from Cervical Dystonia. Everyone who suffers has their own story of torture and how long it took to be diagnosed. It’s a long, hard road to diagnosis and even longer and harder once you start treatment. It’s a merciless tease when you feel better, grab life with zest again, and then fall back into pain. I’m still learning to live within my own limitations, but it’s hard.
I can’t begin express how grateful I am to connect with other people who want to swap tips for dealing with the pain or navigating life with such a fragile margin for error. One late night night and a little too much excitement can set my neck off with excruciating pain. The stresses of life (both bad stress and “fun” stress, like a vacation) make me sick. I desperately don’t want to let CD destroy my relationships, my job, and everything else that I hold dear.
Since CD is something that I think about almost all day, every day, it does show up on the blog a lot.
If you have a minute, there is a campaign with a deadline of June 26 to make September National Dystonia Awareness Month. Right now, there are not many doctors who specialize in this movement disorder. Furthermore, it can become completely debilitating. While getting disability is always very hard, a lot of people with Dystonia have an exceptionally hard time because people have never heard of it, even though it easily falls under the Americans with Disabilities Act. I am grateful for how far medicine has advanced and some people can control their symptoms with Botox injections and other complimentary therapies; however, it breaks my heart into a million pieces when I read other people’s stories of their own families dismissing their symptoms.
Here is some information about the petition:
Join volunteer Mike Delise in his efforts to promote dystonia awareness by asking the Obama Administration to recognize September as Dystonia Awareness Month.
We have just 30 days to generate 100,000 online signatures. If we meet this threshold, everyone who signs the petition will receive a response from the White House. Signers must be at least 13 years old.
To add your name today through a simple registration process, visit here!
Please share this link and encourage family and friends to add their name. We the people can make a difference!
Several dystonia organizations came together and voted to coordinate awareness efforts by commemorating September as Dystonia Awareness Month beginning in 2014.
The registration process took a minute or two. I guess they want to make sure that you really want to sign it!
Also, if you still aren’t sure what Dystonia is, here is a little bit from the petition’s website:
Dystonia is the third most common movement disorder after essential tremor and Parkinson’s disease, but remains largely unknown to the public. Dystonia is a neurological disorder characterized by involuntary muscle contractions causing abnormal, often repetitive, movements and/or postures.
Symptoms may impede the ability to walk (as in generalized dystonia or limb dystonia), control the posture of the head (as in cervical dystonia), speak (as in spasmodic dysphonia or oromandibular dystonia), see (as in blepharospasm), and/or write (as in hand dystonia). Many patients experience debilitating pain. There are numerous manifestations of dystonia, affecting people of all ages and backgrounds. Individuals are frequently misdiagnosed, which delays access to appropriate medical care.
In Other Blog News (!!!):
I am now accepting sponsors and ad swapping! I love the blog-friends that I’ve made, and I’m hoping to create a greater sense of community! I would love to swap ads and feature you on my blog! Email me or check click here. I would love to do giveaways to promote all of the blogs, but nothing is certain yet. If you are interested in that, too, let me know!
I would love to hear about causes that are near and dear to your heart! If you want to collaborate on bringing awareness to a cause or sharing your story please email me or leave a comment! You don’t have to have a blog to share your story.