So it’s midsummers day, the longest day of the year, and quite the apt time to share my thoughts and research about light sensitivity in lupus (and other miscellaneous diseases) with the world.

Since my diagnosis of Lupus I have spent hours upon hours absorbing information off the internet in relation to Lupus and to say the least there is a lot of utter rubbish out there that you may as well print off and wipe your arse with, but you do get the odd little gem.

Are Lupus patients photosensitive?

In short, yes. The American College of Rheumatology (ACR) Revised Criteria for the Classification of Systemic Lupus (1996) has it on their list of symptoms to have (this doesn’t mean you have to be photosensitive but it can lead to a diagnosis of Lupus). Please note notice that the word classification is used and not diagnosis. The ACR criteria’s intended use was never diagnosis (read more about this here).

The general consensus on the web is that it affects 60-70% of all Lupus patients (including all the numerous sub-sets). This figure comes from the history of the patients (what they tell the doctor).

If a group of dermatologists were to test Lupus patients by applying UV light to a small defined area of skin and later biopsied and tested it they would find only ~30% have reproducible results. (The Lupus Book, 3rd Edition, Chapter 24, Dr DJ Wallace)

(Lost yet? It get’s better)

In July 2003 The British Journal of Dermatology published the results of a clinical and photobiological study over time of 100 Lupus patients. I won’t bore you with the details but 93% showed an abnormal result (bloods, physical exam, etc.) over a period of 2 months with no evidence at the actual test site! (click here for excerpt)

In summary: If you have lupus and have no reaction to light, you’re in the tiny ickle almost non-existant minority. Count yourself lucky!

So which part of the photosphere should be avoided?

Whether you have Lupus or not, get too close to that big ball of gas in the sky without protection and it will cause damage. Ultra Violet Radiation does most of the damage and consists of three elements; UVA (Ages the skin), UVB (Burns the skin) and UVC (kills things!).

Enough UVC doesn’t really make it through our atmosphere to be worried about so we’ll disregard that.

UVA & UVB are to be avoided (i.e. cover up and wear SPF 50+ sunscreen – there’s another debate on the ingredients of sunscreens there!) and for those of you who think you’re protected by cloud cover, some types of cloud amplify the effects of UVR, and if you think you’re safe in your car with the windows up, think again. Ordinary glass blocks/absords only ~half of UVB and allows all of UVA through.

There is also a small proportion of Lupus patients that react in the absence of UVR and this has been attributed to “Blue” light. That is, the light at the short end of what we can actually see.

And what about the big CFL debate?

Fluorescent lighting is the constant buzzing in your ears, the headaches and eye strain and for some “normal” people the nausea as well.

For someone with Lupus (and/or other miscellaneous diseases) it is just another source of UVR that should be avoided.

You can work under them if they have been protected by filters (for UK people a good company is this one – Encapsulite)

Is there anything else to consider?

Yes! Beware the dreaded washing powders and stain removers!!! Most contain optical brighteners that can permanently bind to your skin and enhance the effects of of UVR. Be afraid, very afraid!

The one that I’m using is Ecover. It contains minimal rubbish and is environmentally friendly. It smells good too!

I have questions!!!

Please feel free to add a comment or if you fancy a general look elsewhere to validate stuff I’ve said or even find out about products available and from where, try Eclipse to start with (click here) they have loads of links.

I’m sure I’ve forgotten something….

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