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Treatments and cures
By John Sanders
September 1999
The most frequently asked questions from people visiting our website are about treatments and cures for nystagmus. It's understandable that people hope there's some miracle cure and they just haven't found it yet. I'm sure that after the euphoria of finding the Nystagmus Network website, disappointment often sets in when people read the section about treatments and cures. Many people still hold out the hope that there's some recent breakthrough that even the Nystagmus Network doesn't know about or that's just around the corner.
While we can never rule out a miraculous discovery about treating nystagmus being made even as I write this, I thought it may be helpful if I put the likelihood of this happening in the context of current medical knowledge. Remember, though, that I'm not a medic. I'm just a journalist who happens to have nystagmus and has talked to a number of doctors, researchers and other medical professionals over the years about the condition.
The first thing to bear in mind is that nystagmus has many causes and, strictly speaking, is a symptom rather than a condition. So, there is unlikely to be one solution or cure to nystagmus. Progress may be made with nystagmus caused, for example, by albinism, which would not help people with nystagmus due to cone dystrophy or childhood cataracts.
Then there's the "dustbin diagnosis" as one ophthalmologist described it to me recently of congenital nystagmus with no known cause. Just how do you go about fixing something if you don't know what the problem is? It's probably not the best analogy, because many of us don't drive, but imagine trying to fix a broken down car if you can't open the bonnet.
Another problem is the likelihood that congenital, or early onset, nystagmus hardwires our vision system the wrong way in infancy. Once the wiring is set the wrong way, current medical thinking is that it can't be changed later on. That applies to pretty well everything in the brain, not just nystagmus and the vision system.
BEWARE FALSE IDOLS
From time to time, people do claim that they can cure or treat nystagmus. Think of a therapy and someone, somewhere will argue that it works for nystagmus. Eye massage, sensory feedback therapy, vitamins, laser surgery, hypnosis, acupuncture -- you name it and you'll find a practitioner somewhere preaching the end of nystagmus.
How do we sort out the genuine claims from the false? It's not always easy and there will always be grey areas, but here's the approach we use. Firstly, if someone really had found a brilliant, foolproof answer to nystagmus, why not share it? If a cure, treatment or therapy works, you subject it to rigorous testing, prove to the world at large your case and retire, famous and possibly rich.
When we approach people making claims about treating nystagmus, we always ask them for details of their results, whether they have published any research papers on the subject and whether they plan to subject their ideas to scientific testing. Sadly, most people simply don't reply.
Secondly, as you all know, it's very easy to temporarily improve the vision of people with nystagmus. Make them relaxed and calm them down. Our nystagmus gets worse when we're nervous and in unfamiliar surroundings. It gets better when we're relaxed and in surroundings we know.
So, what typically happens when you have an appointment in a hospital or clinic you've never been to before? Your eyes start jumping all over the place and your visual acuity falls. After three or four visits, you know they're not going to do anything nasty to you (hopefully), you know the staff, you're relaxed and you can read further down the eye test chart.
Any medical researchers worth their salt will allow for this phenomenon and discount any change in your vision over the first few visits. Unfortunately, people wanting to sell their treatment, or possibly not aware of this phenomenon, could claim that they really have improved your vision.
And, of course, there is the placebo effect. We all want our nystagmus to get better, so even if a medical professional simply tells us "I'm going to do something that MAY make you see better," the chances are we will see a little better.
FAITH, HOPE AND CHARITY
That's not to say that we've given up hope. I'm sure we can all think of lots of illnesses for which little or nothing could be done a hundred or even fifty years ago, which are treatable or preventable now. I certainly hope that nystagmus joins the list of curable conditions in the years ahead.
That is where we as the Nystagmus Network have a role to play. As you will see elsewhere in this newsletter Leicester University is doing some research into nystagmus and is looking for volunteers. Such projects are much easier thanks to the pool of people which can be easily contacted through the Nystagmus Network.
We're also finding that a virtuous circle is developing. As more researchers look at particular aspects of nystagmus, so interest grows and yet more doctors, academics and scientists are attracted to the condition. In addition to what is going on here in the UK and elsewhere, the first meeting of the American Nystagmus Network at the end of July (1999) will, we hope, lead to more research in the USA.
To conclude, I've written this to save people unnecessary heart-ache, not to make anyone depressed. I'm frequently asked whether there is a cure or treatment for nystagmus and sometimes get the impression that some people are clutching at straws.
I hope that by sharing with you what I've learnt over the years, more of you will find it easier to understand why it's probably going to take some time to make real progress towards a treatment or cure.
I don't want to leave anyone with the impression that I or the Nystagmus Network are complacent on this subject. Far from it. We should challenge the fact that in medical terms very little can be done at the moment for people with nystagmus. However, at the same time, we should be aware of the scale of the challenge we face.
This article first appeared in 1999 in issue 44 of the Nystagmus Network’s Focus newsletter.
© John Sanders, 1999
Email: John Sanders
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