Guest: Janet Hieshetter
Presenter: Neal Howard
Guest Bio: Janet Hieshetter serves as the Executive Director of the Dystonia Medical Research Foundation (DMRF). She joined the DMRF in November 20104. Ms. Hieshetter serves on the National Institute of Neurological Diseases and Stroke Advisory Council and also serves as the Chairman of the Board for the American Brain Coalition. She also served on the Illinois Women’s Health Task Force, Massachusetts Bone Health Task Force, Tennessee’s Task Force on Bone Health, The Texas Task Force on Women’s Health and the Pennsylvania Task Force on Women’s Health. Ms. Hieshetter is a graduate of Kalamazoo College and lives in Chicago, IL.
Segment overview: Janet Hieshetter, Executive Director of the Dystonia Medical Research Foundation (DMRF), talks about the symptoms and proper diagnosis of Cervical Dystonia.
Health Professional Radio – Cervical Dystonia
Neal Howard: Hello and welcome to Health Professional Radio, I’m your host Neal Howard, so glad that you could join us today. Our guest is returning to talk with us about, well, sometimes a little known condition, known as dystonia. She is Janet Hieshetter, Executive Director of the Dystonia Medical Research Foundation. She’s returning to talk about some of the symptoms and proper diagnosis of cervical dystonia. Welcome to the program Janet.
Janet Hieshetter: Thank you.
N: Thanks so much for returning to talk with us about dystonia. For our listeners who weren’t with us before, tell us what dystonia is.
J: Sure. Dystonia is a neurological movement disorder that results in abnormal muscle movements resulting in a six posture position, tremors, essentially it’s a loss of control of volunteering muscles affecting the entire body or it can be focused on one particular area, like the eyes in Blepharospasm or the neck in cervical dystonia.
N: Are there different types of dystonia?
J: There are. There’s a generalized form that typically presents in children, ages 8 to 15. And then there are what we call focal dystonia that will concentrate on and affect one area of the brain, I’m sorry, one area of the body, like the eyelids. Your eye sight is good but your muscles are forcing your eyelids to be closed to you’re essentially legally blind. Or in cervical dystonia where you’re not able to control your head movement. It’s being pulled to one side or the other.
N: Now, do these symptoms present equally in men and women and children? Or is there other more prevalent in one of the other gender or age group?
J: There’s a slight prevalent, more prevalence in women with the focal dystonia, like in the cervical dystonia, but in children it affects both girls and boys equally.
N: When we were here before, we talked about some of the results of a recent survey that your foundation DMRF and Allergan Inc. conducted, well it’s attempting to raise awareness about dystonia, you’ve got some results and found out what consumers knew or didn’t know about dystonia and a certain treatment that Allergan has got approval for. Could you talk about this treatment for dystonia?
J: Sure. So, cervical dystonia is one of the approved treatment by the Food and Drug Administration for about botulinum toxin botox, which i think most people associate with cosmetics use but, really it was approved by the FDA first for therapeutic use in situations for like cervical dystonia. So, injection of sedation injects specific muscles. And those muscles are then temporarily weakened to lessen the effect of the muscle pulling. So in the case of cervical dystonia, they’re injecting the muscles around the neck and people are then given relief. Cervical dystonia can be incredibly painful and in addition, your head pulling to one side of the other can be disabling as well. So, botox really help to provide relief for that and it lasts generally from anywhere from 12 to 14 weeks. So the injection needs to be repeated on a regular basis. And it’s for many people, it has then the gold standard in treatment. You know, providing them quality of life in many cases before it actually able to resume going back to work, those kinds of things. So, it’s been really a god-sent for many many people.
N: Why do you think there is such a lack of awareness about dystonia?
J: Well I think we live in an age when we’re constantly bombarded with information and news, and if you don’t know anyone who’s been affected by dystonia, it just sort of falls off your radar screen. I think it’s not a common for people to hear the word for the first time when they get a diagnosis. So, the relief to have a diagnosis because of many cases it may be 3 to 5 years before they actually get one. But then they’re presented with this sort of challenge of “what is this?” and when nobody knows what it is. I mean, when you received a diagnosis of multiple sclerosis or the cancer, people have a generally of the people of the community have a sense of what that is. When you’re debilitated and living in pain and you tell people that you have cervical dystonia and they looked at you and they have no idea what it is, it’s a sort of a compound frustration, I think the people who are affected would that feel.
N: Now, Allergan Inc. that approved to used botox as a treatment for dystonia. Other than the survey in an attempt to raise awareness and gain valuable information, what are other activities have you collaborated with Allergan on in order to raise awareness about dystonia?
J: But we’ve actually work for Allergan now for more than 20 years. They have had the approval actually for about that amount of time. They were the first out in having botox approved both for Blepharospasm (dystonia in the eyelid) and cervical dystonia. And from the very beginning they recognized the importance of raising awareness of these disorders. Not only to help reach people who might be suffering from this and not aware of it, but also helping those who had already been diagnosed, and been having treatment for the reasons that we’ve just talked about. You know, how can everybody understand what it is and we’ve worked together in promoting people telling their own story, we had a program called Dystonia Moves Me where people share their personal story, just in their community. They might tell their favorite bank teller or grocery clerk that the reason that their head is pulling to one side is because they have this thing called cervical dystonia with the hope that when that person hears the word dystonia down the road they’ll say “Oh, wait a minute, I know somebody who have that” and actually may be create some deeper awareness. Allergan is also partnered with the DMRF to do community-wide awareness events, we have a series zoo walk, they have taken place around the country and have generated hundreds of thousands of media impression to help people understand not only what dystonia is but also how it affects life and that is something that can be treated.
N: Let’s talk about how it affects lives, you talked about it being sometimes extremely painful, debilitating disease affecting, you know, getting a haircut or going to a dentist. When it comes to, I guess the psychological impact of having this disorder, talk about how important it is to seek proper treatment because of a lifestyle changes.
J: Sure, it is a great question. So, people who have cervical dystonia are often isolated and so it is important for them to know that they are not alone in this process. And I think our awareness activities have been helpful in doing that kind of outreach to connect them to other people. But also they, they’re very self conscious about their looks. They tend to be not as eager to engage socially and to go out with family and friends that they might have before. There’s a high incidence of depression with people who have cervical dystonia. It really affects a person in all aspects of their life, many, because of the severity of their cervical dystonia and the pain and the fact that they don’t have the mobility with their head, may have to go on to disability so they’re having to give up their profession, the careers that they worked, long and hard to achieve. And that, you know when you reach the certain point, you know your career is a part of your identity so you’ve lost the part of yourself because of this cervical dystonia that people don’t know about, they don’t know what it is. So it’s just really, snowball into a lot of frustration on many levels.
N: And where can the listeners gonna get some more information about dystonia?
J: Well they can certainly contact the DMRF website www.dystonia-foundation.org or call our offices at 1800-377-3978. I would encourage them also to talk to their physician, you know I think that is important too. If they think themselves or their family member may have cervical dystonia, we always encourage them to talk with their physician or seek out a thorough work out from a movement disorder neurologist.
N: Well it’s been great talking with you today Janet.
J: Thank you very much for the time.
N: Thank you. You’ve been listening the Health Professional Radio. I’m your host Neal Howard in studio with Janet Hieshetter, the Executive Director of the Dystonia Medical Research Foundation or DMRF. And she’s been with us discussing some of the symptoms and proper diagnosis of cervical dystonia and also the ways in which it affects a person’s life on more than a physical level. Transcript and audio of this program are available at healthprofessionalradio.com.au and also at hpr.fm and you can subscribe to this broadcast on iTunes.