Advice from patients for patients

We asked our patients, "if you were to give a key piece of advice to someone who was newly diagnosed with photosensitivity, what would it be?"

See their responses below:

Engage with others who have similar experiences.
I would encourage confidence and resilience, emphasising that photosensitivity should not limit one’s activities and enjoyment of life.
Ask for help when you need it, the Scottish Photobiology Service and PALS support group are there to help.
Be honest with friends, family, and your employers about how your photosensitivity affects you. Educate them in the condition so that they know how to best support you.
You don’t need to buy expensive SPF clothing. There is reasonably priced clothing that can help provide extra protection.
Make use of outdoor equipment if possible. Gazebos and other items provide shade and can enable you to enjoy outdoor events with family and friends.
Try not to worry what people think.
Distribute the materials provided by the Scottish Photobiology Service to your friends, family, employer’s, doctors and try to spread an awareness and understanding of photosensitivity to others.
Walk on the shaded side of the street.
Sit on the aisle of public transport, if you are affected by the light coming through windows.
When clothes shopping, stretch the material up and hold it up towards the light. Looking at how much light comes through will help you see how much protection that garment is going to offer.
Keep a diary of when you develop reactions. By documenting this you may be able to relate the reactions to certain activities and behaviour. This can help to manage you condition more effectively.
If it is UV light that you are sensitive to, try and check online to see what the UV levels are going to be like in advance of any outdoor plans, to help you plan more effectively.
If energy efficient light bulbs cause a reaction, think about the different environments you visit. Ask family and friends if they can change their lightbulbs so that you don’t have a reaction.
Plan in advance; when going out make sure to bring sunscreen and any extra protective clothing that you might need. If you can, check where you will be able to access shade if you are going to be spending time outside.
Plan holidays where you can do activities in the evenings so that you can still enjoy being outside.
Make the general advice provided, personal to what works for you.