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Putting BEB on the map

31/01/2019
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Benign essential blepharospasm (BEB) is a focal dystonia: a neurological movement disorder involving involuntary and sustained contractions of the muscles around the eyes.

The term essential indicates that its cause is unknown, but fatigue, stress or irritants are all possible contributing factors. It’s rare, not widely known and all too often diagnosed erroneously at first.

Had I known all of this several years ago I might have avoided a long period of stress and exhaustion. Unfortunately, I am one of many people who has struggled to receive an accurate BEB diagnosis and endured long delays before receiving effective treatment.

BEB may appear as frequent blinking, squinting of both eyes, spasms of eyelid closure, or simply difficulty in keeping the eyes open. It’s estimated that five in 100,000 individuals have BEB, the larger proportion being older women. These figures come from the National Organization for Rare Disorders in the United States.

It’s not life threatening, but there is no cure. The best form of help currently available is in the form of botulinum toxin injections, administered every 10–12 weeks. Without this treatment many of us suffering from BEB would be unable to open our eyes and be left functionally blind despite having very good eyesight.

"By this time, I really did feel that I had a mental health issue. My day-to-day life was affected hugely, and just trying keep my eyes open and focus was debilitating"

I was diagnosed with BEB in September 2014, although getting that diagnosis was a huge hurdle. Over a two-year period ‘dry eye’ was all I heard from my GP, my optometrist and finally the first ophthalmologist I visited. By this time I really did feel that I had a mental health issue. My day-to-day life was affected hugely, and just trying keep my eyes open and focus was debilitating.

Almost two years on and 13 different eye drops later I finally found an ophthalmologist who diagnosed me as having typical Benign Essential Blepharospasm. Knowing this thing has a name and is not just in my head was a huge relief, I had really got to the point of believing that I needed psychological help.

My first Botox treatments were in September 2014, and with only a few hiccups in terms of getting the injection points correct I have not looked back since.

I still have triggers that set me off, such as bright lights, sunlight, wind and computer screens to name a few. Dry eyes are also a product of the condition, so keeping my eyes lubricated is also very important, while brightly lit areas are also challenging.

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Many members of Blapharospasm Australia, the organisation I am a part of, have faced similar difficulties in getting a diagnosis. As a registered charity our support group focuses on shortening diagnosis periods and helping people reduce this debilitating condition to the level of a minor nuisance.

Early diagnosis of this condition is a must, yet its rarity means it is misdiagnosed all too often. That’s why I’m trying to spread the message, particularly to optometrists and GPs, that blinking can be more than dry eyes. Prompt referral to an ophthalmologist or neurologist who is familiar with BEB will save a sufferer prolonged mental grief.

Aside from referrals, optometrists can play a role in helping BEB sufferers find relief in the management of the condition, as research indicates some people with BEB benefit from spectacles with a special tint called FL- 41. This tint can also come in different intensities for wear inside and outside.

Yet, unfortunately sourcing these lenses can also be problematic as not all optometrists have heard of FL-41 and currently finding a spectacle maker in Australia who will have lenses made with this tint often proves quite difficult.

The more awareness we can raise about the condition, the more we can help. As Australia’s primary eyecare providers, optometrists, ophthalmologists and orthoptists have a massive role to play in educating patients, and being able to spot the telltale signs of BEB.

It would likewise be terrific if all specialists recommended that their patients join our group.

BEB need not be the all-consuming drain on a life that it was for me for so many years. The more we know, the better able we are to spread the word and help people before it’s too late.


Name: Nola Pense
Organisation: Blepharospasm Australia
Position: Member Liaison
Experience: BEB sufferer for more than seven years
Location: Perth

 

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