Cover up, Cover up, Cover up!!! PLE sufferers are advised to wear "dense weave" fabrics. Although they dont completely stop the UV radiation from getting through to the skin, they can never the less help. We are also advised to wear a colour which doesn't "attract" sunlight, i.e: black! This can sometimes be a bit of an issue for me as I have somewhat "gothic" sensibilities (have a look at my poetry and you will see what I mean) so I love to wear black most of the time (when I am not wearing red and purple, lol). Unfortunately if I am outside, and especially in high summer, black isnt the most advisable colour to wear, so I tend to go for gothic inspired white dresses instead which can look just as "gothicky" and as nice as their black counterparts. I also have to wear a sun hat at all times AND use a parasol, whether that be a handheld one for trips outside of the garden, or a garden parasol. I have found that it has been a good idea to tell as many friends as possible about my PLE, that way when I am invited to BBQ's or parties they are kind enough to put out parasols or a garden gazebo for me to sit or stand under.
Sunblock: - As far as I am concerned there is only one sunblock that actually helps with this condition: - Neutrogena Ultra Sheer Dry Touch SPF 100+ (NO - I am NOT kidding about the strength of the SPF lol). This range also comes in lower SPF's but the 100+ is the best for people with PLE. This is a BROAD SPECTRUM COMPLETE SUNBLOCK meaning it protects against UVA & UVB, and unlike a suntan lotion it works hard to completely block the sun from reaching the skin. It is Non - Comodegenic, meaning it doesn't clog the pores and is, I believe, the only sunblock on the market that is completely sweatproof. One other major plus is that, like its name suggests, it is COMPLETELY DRY to the touch a couple of seconds after application, so you dont get the dreaded "doughnut effect" when you are on the beach and the wind blows! No stickyness when you have to wear this product the whole year round is definitely a plus in my book. Unfortunately it can only currently be ordered direct from Neutrogena in America, who tell me they have no current plans to distribute it "over the counter" in Europe as "there isnt enough interest in the product in European countries". Order from www.neutrogena.com. An 88ml tube is usually in the region of £12.00 - £15.00 plus a small amount for P&P. Amazon (www.amazon.co.uk) sometimes (but RARELY) stocks the 100+ SPF, usually they tend to stop at 75 SPF & when able to order from Amazon the same 88ml tube costs in the region of around £9.00 - £10.00 plus P&P. PLE sufferers are also advised to use a sunblock that has been especially designed for the lips, with an SPF of 20 or more, Boots the Chemist (UK) www.boots.com is a good place to look for lipsalves that usually have an SPF of 25 or more. Failing that Superdrug (UK) www.superdrug.com also sometimes stock them.
- Antihistamines: My G.P. gives me an antihistamine called Fexofenadine (180mg), which I have to take once a day, all year round, whether I am going to leave the house or not. Unfortunately, by necessity it is very strong, so it can make me feel very nauseous, therefore if you are being prescribed this medication for the first time - be warned! (And possibly take a sick bag with you, lol) It works in the same way as "over the counter" antihistamines, by blocking histamine H1 receptors, but it is a lot stronger. It does not prevent the actual release of histamine, but prevents it binding to its receptors. This in turn prevents the release of other allergy chemicals and increased blood supply to the area, and provides relief from the typical symptoms of sunlight allergies. If you are prescribed Fexofenadine and suffer with nausea because of it, ask your GP about Domperidone 10mg which is a pretty effective anti-nausea medication. NOTE: You MUST consult your GP BEFORE taking any medications.
Hospital Therapy: At the beginning of the Spring I have to go to St Thomas's Hospital in London for PhotoTherapy/PUVA Therapy, which is basically where my skin is gradually exposed to increasing doses of UV light for 5 days a week over a 3 week period, producing a limited "hardening" of the skin to the effects of UV Radiation (sunlight). Fun Times!!!
Head for the shade as often as possible. Yes - honestly. Although I can go out during the day even when the sun is bright, and providing I have taken all the precautions I need to take before leaving the house, I still can't stay out in the sun for hours at a time. Every couple of hours I have to head inside for a break from the UV radiation outside, sometimes sooner when the sun is very hot. When taking refuge inside, PLE sufferers are advised to sit somewhere that is fairly dark and is definitely away from the windows or any source of natural light, as UV can penetrate, and be be amplified by, window glass. It is worth noting here I think, that this also includes the window glass in cars. It isn't always possible for a PLE sufferer to sit in the middle of the back seat, so it is adviseable to buy window shades for both the side windows and the rear window, and to sit in the back seat (unless you are driving of course.) If you are the driver then the best way to combat the problem of exposure to UV radiation through the wind shield of your car, is to break your journey up into manageable (and skin healthy) portions of time, especially on longer journeys. Whether you are the driver or not, it is absolutely essential that you wear your sunblock and cover up your skin for the entire duration of the journey.
Miscellaneous Travel Precautions: I have found in the past that it is a really good idea to inform your travel company of your PLE in advance. This way they will be able to tell you if their coaches/buses/trains, planes and automobiles are suitable for you to travel in. Most travel/tour companies are actually well equipt to accommodate travellers with PLE as most methods of travel are now kitted out with things like window curtains etc, or they can sometimes provide sun shades for the windows. However it is still adviseable to tell your travel operator in advance. I have found in the past that when my son and I have used a couple of coach companies, although they clearly stated that they had window curtains unfortunately when we got to the pick up point it transpired that the curtains had been removed for cleaning purposes and had not been replaced in time for our journey. Informing the companies in advance means that you can claim a full refund for the loss of the journey if you decide to not take the chance of travelling without the protection of window curtains etc. Oh and make sure that they dont sit near the "quarterlight" in the roof if you are travelling by coach. I fell foul of a coach quarterlight once, and I wont use the words here that I would normally use to describe the resulting rash and headache!
Here are some Websites that offer good help, advice and support for those of us with PLE or any other sunlight allergy: