It's September -- Dystonia Awareness Month for many of us. This month, those affected by dystonia are actively raising awareness with friends, family, and the general public. With the smashing success of the ALS Ice Bucket Challenge in raising over $115,000,000 for ALS research in just six weeks and amid news of breakthroughs as a result, many wonder how a disease that affects far fewer people (30,000 vs. 500,000) can gain so much more traction. Two names come to mind: Lou Gehrig and Stephen Hawking. When one is asked to explain ALS, all they have to do is mention one of them and there is an instant image of what ALS does to its victims. Dystonia has no famous connection nor is it always so virulent; many patients like myself are ambulatory and suffer the pains and spasms in obscurity. But if I were to choose, I'd rather have dystonia. Like ALS, dystonia takes so many things away but most of us are not rendered completely immobile or dead within years or even months after diagnosis. Regardless, being affected with either is equally tragic.
Raising awareness for dystonia includes improving the public's insight into its collateral damage. With ALS, everyone can imagine caring for someone who is wheelchair bound and increasingly dependent on others for day to day activities. It's a situation that has been portrayed in movies and television. Dystonia is not so uniform in its virulence. Some adults and children are wheelchair bound and bedridden because of the muscles affected but most are not. I am one of the LUCKY ones if anyone can ever consider oneself lucky with dystonia. We are all challenged to different extents.
I was diagnosed in 2007 after 17 years of painful, puzzling symptoms. After two years in the pity pool post diagnosis, I became an active advocate for others like me and until June of this year, I was the director of American Dystonia Society. In the past six years, I have met many dystonia patients and heard their stories of struggles, pain, isolation, and desperation. As I look back over the past 25 years, I see the collateral damage dystonia causes in many lives including my own.
We have yet to see a study on the cost of dystonia to the American economy. There is the obvious cost of medical care for those lucky enough to receive treatments that only address the symptoms. I receive quarterly botulinum toxin injections that can cost an estimated $20,000 annually according to my insurance company. There is no data to document the economic cost of lost work and productivity attributed to dystonia. There is no estimate of the economic toll on our caregivers. I have not seen an epidemiology study that can tell you precisely how many Americans are affected. We do not know how many of the estimated 500,000 Americans have been diagnosed nor do we know how many actually receive treatments.
For my part in raising awareness this month, I would like to open a window into the collateral damage caused by dystonia based on personal experiences and observations. As with any chronic disease, the immediate family and personal relationships are in the front lines and the first to suffer damage. Prior to my diagnosis, the pain and spasms made me short tempered and frustrated. My family took the brunt of my anger and my relationship with them was nearly irreparably damaged and my marriage was in jeopardy. I was diagnosed in time and my wife took the time and effort to learn about dystonia with me and realized that it was the disease that had tormented us for years. In the past eight years, we have been able to mend much of the damage and I now enjoy a wonderful relationship with her and our children. My friends realize that my anger and personality issues a few years before my diagnosis were caused by dystonia. I am one of the lucky ones whose family and friends learned about dystonia and their little bubble of awareness around me has helped me cope. Other patients are less fortunate as ignorance and fear of dystonia haunt them. One saw a newlywed husband walk away from their fledgling marriage days after they learned of her diagnosis. His fear of the unknown left her to face her struggles alone for 20+ years. There are many accounts of broken marriages and relationships caused by dystonia. Broken homes with children sometimes result. There are many who desperately hide their condition in fear of having people walk away from them. There are patients whose family and friends refuse to believe that dystonia is real and accuse them of faking the disease for sympathy. These patients live in isolation and continue to be ostracized by friends and relatives. The collateral damage of broken lives and relationships is immeasurable.
Young children of patients are unfortunate victims of their parent's dystonia. There is a huge burden on their parents in dealing with healthcare costs as well as providing quality parenting time. Parenting is difficult in the best of times let alone when a chronic painful disease looms. Sadly, bullying can arise when a child has a "spastic" parent. Other children who do not know anything about dystonia can be cruel and this adds to the burden of growing up.
Parents of children with dystonia bear a significant brunt of the disease. There is angst in having a stricken child and the burden of providing medical care. The time and effort will take its toll. Healthy siblings will be collateral victims of ignorant bullying and inequitable attention. For a parent, ensuring independence and adult care for the stricken child will seem insurmountable.
It takes a significant amount of effort to be friends with a dystonia patient. There are physical limitations which limit our activities. Our challenges are accompanied by moodiness and anger that comes with the pain and frustration. It requires a lot of understanding to be friends with those who are angry and resentful.
Many people with dystonia are caring, wonderful people but are virtual recluses because of dystonia and lack of awareness. They are out of sight and out of mind and their isolation makes us all collateral damage. We are deprived of their company, creativity, love, and friendship because they struggle alone with dystonia. We need to remember that they are our friends and family who should not face dystonia alone.
This month, many patients' friends and family will be raising awareness about dystonia. Please take the time to listen or read and learn about how dystonia affects all of us. With an estimated 500,000 afflicted Americans, there's a good chance you are collateral damage but just didn't notice. Awareness will help reduce the collateral damage and improve the lives of those who support and care for those with dystonia. We may get closer to better treatments and maybe even a cure. Many of us will be happy for a small bubble of awareness to improve our lives and the lives of those who care for us.