Blog

by Sophia Speakman, EPP patient and BPA volunteer

A quick note: EPP and all porphyrias vary dramatically in their severity and form. The reflections shared in this piece are based on Sophia’s personal journey and might not reflect the experiences of others.

As the days get longer and the weather starts to brighten up, many look forward to spending more time outdoors. However, for those living with skin porphyrias, this change in season can bring a mix of feelings, from optimism to anxiety, apprehension and uncertainty about how increased sunlight might affect pain and the ability to take part in life’s adventures in the months ahead.

For those living with skin porphyrias, spring can be a helpful time to start preparing physically and mentally for what’s to come and thinking about what works best for you as an individual, and ways to try to reduce heightened anxiety.

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Sharing practical ways to stay protected

Members of the porphyria community have shared their top tips and we’ve highlighted some below:

• Wearing clothes that I know I feel safe and comfortable in, sometimes that’s just good coverage, sometimes it’s more specialist fabrics or UV shades or umbrellas
• Being more aware of my surroundings, especially water, windows or pale surfaces that can reflect light more than you expect
• Choosing where and when I go out carefully, earlier in the day, later in the evening, or somewhere with reliable shade
• Checking the weather more closely, not just for temperature but for brightness and conditions
• Keeping things with me that help me deal with a reaction quickly: water, a fan, somewhere to keep out of the light.

Taking these kinds of practical steps allow you to start to develop an instinct for managing your porphyria symptoms. Getting a ‘feel’ for the light and what your body can handle on a given day. That doesn’t mean it’s predictable, but it does make it feel slightly more manageable, helping you feel a sense of control and safety.

Planning ahead together

Everyone’s experience of porphyria is different, but some people find it helpful to ease into increased light exposure gradually. Taking time to plan ahead, whether that’s thinking about how long you’ll be outside, what protection you’ll need, or getting stocked up on essentials like hats and suitable sunscreens, can make a real difference.

Some in the EPP/XLEPP community have experimented with their own form of light therapy. They find that short, controlled periods outdoors helps build confidence about what their limits are, while reducing the risk of symptoms. This isn’t for everyone but is something I’ve found really helpful. I’m fortunate that I’ve been able to gradually build up my tolerance over time, even experimenting with trips to brighter, warmer places. For others, this may mean extending time outside by 1 or 2 minutes, which can be really valuable.

When the weather starts to improve, I try to reintroduce exposure gently, whether that’s a short lunchtime walk or even just sitting outside with a cup of tea in the morning. Doing this little and often helps me build up that initial layer of exposure in a controlled way, but just as importantly, it helps rebuild my confidence. It makes it feel safer to be outside again, and that mental shift can make a big difference when it comes to making plans with friends or family.

That said, it doesn’t always feel straightforward. There are still days where the anxiety is there, or where plans feel uncertain, and that’s a completely valid part of living with a condition like this.

Finding the right balance

Living with a skin porphyria often means finding a balance between staying safe and maintaining your quality of life. The brighter months don’t always have to mean avoiding the outdoors altogether, but they might look a little different.

Some days will feel easier than others, and sometimes things won’t go to plan. Giving yourself flexibility and being kind to yourself in those moments is just as important as any preparation. As a community, sharing experiences and supporting each other can make a real difference. Hearing what works for others can help you feel less alone and more confident in finding your own approach.

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