What is photophobia is clear, but What can you do about photophobia?

What is photophobia is a relevant question until you are not sure you have it. Once you know you have photophobia, the really important question becomes What can I do to improve the quality of my life?  This is because photophobia is likely to be affecting negatively your professional and personal life. I have been reflecting on this question as I was preparing a summary of the state of research on photophobia (see What is photophobia: definition, symptoms, causes, definition part 1 and part 2). Here are my afterthoughts.

First let me summarize:

1. Photophobia definition and photophobia symptoms are clear

• Photophobia is a common symptom.
• Photophobia is a debilitating symptom, affecting importantly one’s life quality.

2. Photophobia causes are poorly understood

• In adults the cause of photophobia may be identified most of the time but not in children;
• There are many possible causes (ocular, neurologic, psychiatric, etc.). Often a constellation of causes (see Photophobia: Looking for Causes and Solutions) might be responsible for photophobia.
• Causality is clear in the case of few conditions associated with photophobia, even in these cases the causality does not hold for all people;
• In many cases (most conditions connected to photophobia) causality is blurry at best. The researchers speak of conditions associated with photophobia.
• Identifying the cause of photophobia is in most cases very difficult, even for those MDs who focus on photophobia.
• A lot of research on photophobia causes is still needed.

3. Photophobia treatment – are there any really known treatments?

• Photophobia treatment depends on the cause (but most photophobia causes are difficult to diagnose).
• Most clinicians won’t know what to do with photophobia.
• Few MDs make photophobia their specialty.
• Even if seen by the best photophobia clinician success is not guaranteed (too little is known about photophobia causes and less still about photophobia treatments).

So then, what can you do about photophobia?

• The first thing would be to go see a doctor. If I could afford to be seen by the authors of the article at the Departments of Ophthalmology and Neurology at University of Utah, I would try that.
• You might try writing to them to ask about any colleagues who work close to where you live. (I am about to do that, maybe I am lucky!? I just thought it might be helpful to have a list of photophobia specialists on GLARminY! – What do you think?)

But what if medicine cannot help you?

Given the state of our knowledge of photophobia causes and photophobia treatment, this outcome appears likely. Then it seems you are left to our own ingenuity in learning to live with photophobia.

The good news is that there seem to be very many of us and then there is GLARminY. According to Shedding Light on Photophobia, photophobia is a “common symptom”. What is not clear is how common? (In my country – Slovenia – around 5% of the population complains about glare and light related pain/discomfort. If this statistics holds for the world there should be many millions of people suffering from photophobia!)

GLARminY is at its early stages, and currently authored by only one person (me), but the internet affords us the possibility to put our heads together, share our experiences, perhaps some day even exchange products that will have helped us live more normally. I even dare imagine GLARminY serving as a meeting point between a large pool people with photophobia and the researchers. We’ll be better off if we help each other.

Let me know in the comments if you like the above ideas; do suggest others!

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In case you haven’t seen the previous three posts on What is photophobia, they are based on the scientific overview of Photophobia related research. See Shedding Light on Photophobia http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3485070/#R87 by K.B. Digre, MD and K.C. Brennan, MD, published in the Journal of Neuro-Ophthalmology in 2012.

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