Wendy's Story

My name is Wendy and about 6 years ago at the age of 44, I started to develop a subtle tic on the side of my mouth. Sometimes when I would talk to people my mouth would tremor, as if I was nervous, but I wasn’t. I went to a local neurologist who told me that I had a condition called dystonia, one which I never heard of and I work as a medical transcriptionist for 10 years.

Anyway, the neurologist made very light of it and said he would put me on some medication for it. I figured whatever dystonia was it was no big deal. Well, this condition progressed to where my neck began to ache badly on the right side. Then I got knife-like pains shooting through my head where I literally rolled on the floor with pain. I was sent to the University of Miami, where they administered Botox injections. That greatly relieved the pain. As time went on the muscles on the right side of my neck began to atrophy and my neck began pulling to the left. Within 6 months, it was measured at 90 degrees rotated to the left. I was able to move it somewhat.

Shortly thereafter, it froze, where I cannot turn my neck at all. It’s almost like your neck is paralyzed. My form of dystonia is called ST (spasmodic torticollis) or CD (cervical dystonia). It also progressed to my shoulder. Botox eventually ceased to work and I was up to 550 units which is way over the maximum dosage to avoid developing antibodies. This eventually led to two surgeries recently at Baylor University in Houston, Texas, both which have failed. I am now totally disabled. I no longer can work. Driving is impossible being my neck is frozen. Many people get this horrific disease in childhood and it can affect the entire body. My form commonly affects people in their 40s. It can be a very progressive and debilitating disease and most often is.

The point of this whole letter is there are 350,000 cases of dystonia and no one, including most doctors other than neurologists, ever heard of it. I have had so many doctors ask me what was wrong with me?! Why is a condition like multiple sclerosis, which is known to have 300,000 cases, so well known that the public refers to it as MS, not even multiple sclerosis? We have more cases than muscular dystrophy, and many other neurologic diseases that are so well known that they are household words and have telethons. We don’t have a Michael J. Fox lobbying for dystonia, getting us the attention we so desperately need. People hear Botox and they think of wrinkles, sweaty palms and other vanity issues. Does anyone know that Botox was specifically created for dystonia to paralyze our muscles from going into the severe spasms that we have? It’s time we have our "heyday" and people know there is a condition that is severe, painful and disabling called dystonia. Please help us get this thing going so we can educate the public and

unfortunately our medical profession as well.

We are out there, 350,000 of us, suffering from a disease that is life altering. I haven’t been out to dinner with a friend in over a year being my spasms are so bad I can’t sit still without wanting to cry from this. Social life becomes a distant memory.