Yesterday I had the pleasure of speaking with New York Opera Singer, Hallie Neill and Mrs. North Carolina, Dawn Brinkley on the topic of cervical dystonia and blepharospasm and how these conditions can be treated.
Candace Rose: Dawn, what are cervical dystonia and blepharospasm?
Dawn Brinkley: "Cervical dystonia is a rare neurological condition. Characteristics of cervical dystonia include muscle spasms, involuntary head movement and posturing. When you have it, you may not know what it is. Unfortunately because it's so rare it takes several doctors before you find that right cure or diagnosis. Blepharospasm is the involuntary muscle spasms of the eyelids affecting the eyes."
CR: Statistics show that 50% of patients experience symptoms for more than a year prior to being diagnosed, why do you think this is?
DB: "So little information."
CR: Hallie, can you tell us more about the "Make Your Mark" campaign please?
Hallie Neill: "Yes, the Make Your Mark campaign is designed to inspire people living with chronic conditions like cervical dystonia or blepharospasm. It also raises awareness and it shares some wonderfully inspirational stories about people who are living with these conditions."
Make Your Mark Campaign
CR: Can these conditions be treated?
DB: "Yes. Actually, Candace my protocol right now and each person has to find that customized treatment plan with their physician. For me I use Xeomin, which you can find more information at Xeomin.com. It's an injectable along with other treatments. Part of my plan would include massage therapy, physical therapy to keep the muscles supple and palpable, and a positive attitude is really the number one asset in my toolbox."
CR: Do you have any words of advice for those struggling with these conditions?
HN: "Yes, I would say probably the best advice is to visit our website, MakeYourMarkCampaign.com where you can feel inspired. We encourage people to share their own creative expression. As a professional Opera Singer I have found a great tool in continuously staying creative and expressing myself – it's healing, it's inspirational and it definitely impacts how I feel about myself and how I feel physically. We all have a mark we can make creatively, whether singing or poetry or painting or cooking and you'll read more about those stories at the website."
DB: "And for myself, I had never been in a beauty pageant and the one thing you don't want to do having this condition is be judged but I wanted to do it to show other patients that live with this condition that this is not life ending. This is a defining moment, turn the page, let's go to the next chapter and be inspired. Inspire others as I'm inspired by Hallie. I'm so glad I met her and I'm so eager to see who all comes to the Make Your Mark campaign, so we can compare our stories collectively, because it's a healing process."