I recently had the pleasure of speaking with Nilda Rendino, Vice President and Advocacy Chair of the Benign Essential Blepharospasm Research Foundation and Dona Norton on the topic of blepharospasm, a devastating disease which has affected both of them and often times goes years without being properly diagnosed. If you suffer from dry eyes, excessive blinking and sensitivity to light, you may (according to Merz Pharmaceuticals) be one of the 53% who goes at least a year without a proper diagnosis of the disease.
Candace Rose: Nilda, as the Vice President and Advocacy Chair of the Benign Essential Blepharospasm Research Foundation, can you tell us what blepharospasm is and give us more information about the foundation?
Nilda Rendino: "Right. Well, blepharospasm is a rare neurological condition. Blepharo means eyelid in Greek and spasm is involuntary muscle contraction, so when you put that together you have us with eyes that blink and spasm uncontrollably. We can't do anything about it and if you don't get treated properly you can end up functionally blind even if you have 20/20 vision because you can't keep your eyes open. The foundation was started 30 years ago by a woman named Mattie Lou Koster who had the same condition and who had gone through a long trial of getting a diagnosis so she decided that she would start an organization that would help other people get the help they needed in terms of information; in terms of a treating physician who could help and would also provide support through support groups."
Benign Essential Blepharospasm Research Foundation – Blepharospasm.org
CR: This next question is for both of you. You both went many years without a proper diagnosis- what was that like and why do you think it took so long to be diagnosed?
Dona Norton: "Well, it's quite a struggle. It's a very frustrating struggle. You know that you definitely have something wrong; your eyes are squeezing, you're blinking, your eyes are very dry and gritty; you have a hard time being in light and you know that you have something wrong but you can't quite figure out what it is. So then the journey starts to try and find a diagnosis, so for me it took two years. I saw many different kinds of doctors and finally ended up at a movement disorder specialist and that's where I'm being treated."
NR: "It took me six years and part of the reason is that it's a little better now but it used to be that doctors might have heard about it in medical school, but never seen a patient. So it takes some specialized doctors to be able to diagnose it properly and to treat it properly."
CR: Nilda, who is more at risk for the disease?
NR: "Well, women get it more than men and it tends to begin to affect some people beginning in their 40's on to 60's, 70's although recently younger people have started to be diagnosed."
Dona, what has treatment been like for you?
DN: "Treatment's been interesting for me. Again, it's been quite a journey. Right now I'm on a new treatment path, I use a new product that's just come in, it's called Xeomin and you can find more about it on Xeomin.com. Again, it's injected, I go every three months and for me personally, it's been wonderful. It's jut been a really good product for me and it's just really, really worked well for me."
Image courtesy of Xeomin.com
NR: "Onabotulinum toxin injections, that's the primary treatment. They don't know the cause and there isn't a cure, so all we can do is treat the symptoms and this is the main way to treat it, and I also go for injections every three months."
CR: Do you have any additional information you'd like to share?
NR: I'd like to have people be aware of the blepharospasm.org website, which is the foundation website where they can get information on getting educational literature, where they can find support groups in their areas, where they can contact the office or one of the contacts on the list on our website that can help them find a doctor who knows how to treat the condition, who knows how to inject because everyone that can buy botulinum toxin doesn't necessarily know how to inject it properly."
DN: "And basically we're here to raise awareness. There's so many people that go undiagnosed or untreated and once you are diagnosed it can be treated and you can have a very healthy, fulfilling life."