Hope and help for people living with little-known movement disorder
Focal dystonias affect muscles in a single part of the body and they affect about 295 out of every 1 million people in the U.S., according to a study conducted in Rochester, Minn. The actual number of people who suffer from these conditions, however, may be much higher since the disorders can go undiagnosed or may be misdiagnosed for years, as revealed in an online survey of Americans diagnosed with cervical dystonia (CD) or blepharospasm conducted by Harris Interactive on behalf of Merz Pharmaceuticals, LLC.
These two more common focal dystonias – CD, also known as spasmodic torticollis, and blepharospasm – can impact people in many ways. In fact, 91 percent of survey respondents report that their condition has negatively affected various areas of their lives. CD causes contractions or spasms of the neck muscles that keep the head upright, and may also cause neck pain. Blepharospasm affects the muscles around the eyes used to blink. Involuntary contractions in the eyelids can cause increased blinking or even closing of the eyes.
It’s not uncommon for people living with CD or blepharospasm to have their symptoms remain undiagnosed for months or even years. More than half of the CD and blepharospasm patients surveyed (55 percent) said they had experienced symptoms for a year or more before receiving an accurate diagnosis. And the average patient saw three doctors – including two specialists – before learning the name for their condition.
The causes of CD and blepharospasm remain unknown, and both the general public and many health professionals may be unaware of the disorders. In fact, 89 percent of patients had never heard of the disorders before they were diagnosed, and 51 percent believe healthcare providers’ lack of knowledge contributed to the delay in getting an accurate diagnosis, according to the survey.
That was the case for Dona Norton of Ocean City, N.J. Ten years ago, she began experiencing symptoms that included frequent blinking and a tight feeling around her eyes. “At first, I thought I had allergies, that it was caused by stress, or that maybe I needed to update my eyeglass prescription,” she says. “After a year and a half of consulting with five doctors, including a general practitioner and an optometrist, I met with an ophthalmologist. He referred me to a neurologist who finally diagnosed me with blepharospasm.”
Fortunately, once diagnosed, people living with CD or blepharospasm do have treatment options, including medication and surgery, according to the National Institute of Neurological Disorders and Stroke.
“People living with blepharospasm or any chronic condition really have to be their own advocates,” Norton says. “You have to take control, do your own research and find out about new therapies and options. You’ve got to realize you are more than a disease. You are a real person, with a real life, and you have so much to give.”
Learn more about people living with CD and blepharospasm at www.MakeYourMarkCampaign.com.