The cutaneous (skin) porphyrias can all give sensitivity to sunlight, on exposed areas of skin. As with all porphyrias, the severity of the problem varies enormously.
Exposure of the skin to sunlight should be avoided as much as possible. When avoiding sunlight is not possible, special sunblocks which block visible light can help. Hats and clothing which cover up the skin are also recommended.
As EPP is characterised by sensitivity mainly to visible light, conventional sunscreens that are formulated to protect against just ultraviolet (particularly UVB) are simply ineffective. Reflectant sunscreens that are based on titanium dioxide or zinc oxide will be more effective as they cover both UVA, UVB, and visible light to a degree. In the UK, the SPF (sun protection factor) number tells you how effective the sunscreen is for UVB, and the star rating (usually found on the back of the bottle, with a maximum 4 stars) gives a measure of the UVA protection.
An example of a reflecant sun screen is the Dundee Reflectant Sunscreen and if you haven’t already used Dundee Cream it’s worth a try. Ask your GP to prescribe it for you. Your GP/chemist will need to contact Dundee Pharmaceuticals, Ninewells Hospital, Dundee. DD1 9SY, telephone: 01382 632052. Dundee Cream comes in three colours: beige, white and coffee.
For further useful information check out British Association of Dermatologists website www.bad.org.uk and type in porphyria on the top left search bar.
Wearing clothing such as long-sleeved close-knit fabric tops and long trousers during the summer months is a must. Gloves are useful especially when driving. A buff can help to protect the vulnerable neck area and shoes rather than sandals can protect the feet. Wide-brimmed hats can help, while using an umbrella whilst shadow hopping is an idea.
Useful UV reflective umbrellas can be purchased from www.umbrellaheaven.com.
The light that protoporphyrin absorbs is different from that which causes ordinary sunburn. Usually sunburn is caused by the shorter wavelengths of ultraviolet light (UVB), but in EPP the skin is more sensitive to longer ultraviolet wavelengths (UVA) and to visible light, EPP pain is due to violet light at 400-420nm.
Some EPP sufferers have found that using film on car (and home) windows is useful to give them a bit more time exposed to sunlight before pain occurs. With regards to car windows the rules on cars from DVLA are:
“75% of visible light has to be able to come through front and back windows and 70% through the front side windows”. Therefore for cars there is a compromise between letting visible light through and stopping the violet light which causes the pain in EPP and still having a legal car. There are no restrictions on rear passenger windows or the rear windscreen
Our medical colleagues recommend the following filter films for cars or home: ARC UVCL (ARC Window Films) or Dermagard (Bonwyke) give about 50% protection to EPP patients and are legal on cars and completely clear and colourless. They block out everything up to 400nm, nothing past 420nm and since EPP pain is due to 400-420nm they therefore give 50% protection from the pain-inducing waveband
However, amber films give almost 100% protection for EPP patients. Amber films are suitable for almost any window. The only windows amber film cannot be installed to, are the driver and passenger windows of a car, as only clear films may be installed to these windows under DVLA Regulations.
If a film were developed which blocked out everything up to 430nm that would be more effective, not too yellow, and still OK for car windows but we are not aware of such a film, if anyone does have any information on this please do contact the BPA (firstname.lastname@example.org)
A few companies that supply the above types of films can be contacted as below:
- Bonwyke Ltd, Unit 3 Salterns Lane Industrial Estate, Salterns Lane, Fareham, Hampshire, PO16 0SU Tel: 01329 289621 Fax: 01329 822768 Email: email@example.com www.bonwyke.co.uk
- ARC Window Films, Unit D, Stratus Business Centre, Coupland Road, Hindley Green, Wigan, WN2 4HX, Tel: 01942 523 078. firstname.lastname@example.org, www.arcwindowfilms.com
- Durable Ltd, Unit 1, 498 Reading Road, Winnersh, Reading, Berkshire, RG41 5EX, Telephone: 0118 989 5200, email@example.com, http://durable.co.uk/