Every Cloud

Travelling with EPP

Living with EPP can sometimes mean you are limited in what you want and can achieve in life. This was my thinking for years anyway. After finishing University at 21, I watched as friends and family members headed off on their gap year travels around the world. Hearing their stories, motorbiking around the North Thailand countryside, trekking through the Vietnamese jungle and island hopping around Cambodia, all of which seemed daunting, inaccessible and downright terrifying to me! Little did I realise, but with careful planning and preparation and a bit of blind faith, I would be experiencing all of this and more!

It all started a year ago whilst chatting with one of our committee members, Antony Fearn (who lives with EPP), about his recent travels to Malaysia, Borneo and Western Australia. During this time, a seed of an idea was planted in my head… ‘Maybe I could go travelling?’

Fast forward to August 2019 and I was heading off with my best friend to Vietnam, to 40-degree heat, blue, clear skies, outdoor activities and a complete lack of knowledge as to whether I could manage with my EPP symptoms.

In preparation, I made sure I built up as much of a top-up tan as I could during the summer months ahead of my trip, I purchased sensible clothing to protect me (hat, gloves and trainers) and I mentally prepared myself that I might have to head back home after a few days in Vietnam, if the condition proved to be too challenging.

Well, it was a success! 40-degree heat and sunshine almost every day. I took part in outdoor activities like hiking, swimming in the ocean and kayaking. Travelling has been one of the most amazing experiences of my life and has really helped me to think of my condition in a different way.

Here’s what travelling with EPP has taught me:

• Your internal fears are usually worse than what you ever experience in real life. The imaginary, is much greater and scarier than actually doing the ‘thing’ you’re afraid of. Sometimes you have to just try it!
• Part of the fear of travelling was overcoming what others think of me. I have found growing up with EPP, that I developed a fear of what others would think about my condition. With travelling, I purposely put myself in a situation where I couldn’t hide from EPP. In order to have the same experiences as other people and do the activities on my holiday that I wanted to do, I had to open up to new people about my condition and found I was met with positivity and understanding.
• Be brave and keep pushing yourself – my limitations have been stretched beyond what I thought was possible. If you’ve been able to cope with the condition growing up then you will have some of these qualities – strength, courage, determination and resilience. That’s your toolkit for living with EPP which you can use whenever you are faced with a new challenge!

And I didn’t stop with Vietnam. This was just the beginning of my trip! Since August 2019, I have solo travelled around Thailand, Laos, Cambodia, Hong Kong and most recently Myanmar. I have visited some of the most beautiful places on earth, I’ve made international friends, gained knowledge about other countries’ cultures and histories, and gained a lot of confidence and belief in myself and my abilities.

Enjoying Winter: Our Top 5 Tips

Happy new year everyone (is it still acceptable to say this?). As we move through the winter months, it’s important that we prepare ahead of the tricky seasons for those of us living with EPP (Erythropoietic protoporphyria), VP (Variegate porphyria) and other photosensitive porphyrias. I often find myself reflecting and preparing for the rest of the year both in work and in my personal life during January and my condition is no exception to this.

With this in mind, I have put together 5 tips on how you can make the most of your winter whilst preparing for the warmer months ahead:

1. R&R

I love winter! Colder months can mean you have a perfect excuse to stay indoors and hibernate without having to worry about planning your life around sun exposure. I take advantage of enjoying warmth indoors. Lots of hot drinks, catching up on reading, long baths, and yoga are great for your overall health and wellbeing. I know I feel comforted and content when I experience the warmth despite staying away from it during the hot months, so I use winter months to fully rest and enjoy time catching up with family and friends.

2. Vitamin D

It’s been proven that people with EPP have a deficiency in vitamin D due to the lack of sunlight exposure so it’s crucial we take supplements. I ensure I take them every day during the winter months so I don’t miss out on any of the health benefits (I buy my supplements from Holland and Barrett). If you are unsure of where to start with supplements, I suggest reading up on our website or contacting your specialist to discuss this further. Whilst you’re there, it might be worth stocking up on dundee cream and any other prescriptions relevant to your condition.

3. Enjoying the outdoors

Yes, that’s right, I use the winter months to enjoy spending time outdoors where I can. I find myself going for brisk walks and enjoying light exercise like running. It’s a great time of year for those living with photosensitive porphyria to start a new outdoor sport, especially with the ‘new year new me’ incentive to keep us motivated. I like to go for a Sunday run (‘Sunday Runday’ I call it) and find my body reaps the rewards of breathing in the crisp air. It’s also fantastic for my mental well-being spending time around nature and learning to develop a positive relationship with the outdoors ahead of spring and summer. Why not go for a walk in your local park or explore a new area near your home?

4. Plan a mini break

Now is the perfect time to plan trips away with loved ones whilst it’s colder and more tolerable for those of us with EPP etc. to spend time outdoors. I use the winter months to venture to new places when I feel safer to travel with my condition. You could organise a trip to visit a long distance friend or family member or why not plan a staycation and explore an area of the UK that you haven’t travelled to yet?

5. Exposure

Another brilliant benefit of spending time outdoors is to layer sun exposure on your skin (as the sun is at its weakest during winter months). Start with a 10 minute walk and see how you get on? By using this technique, many people with EPP have reported that their spring and summer has become more bearable – I for one notice a difference in the amount of time I can spend outdoors during the summer because of this technique so it’s worth giving it a go! Alternatively/as well as natural sun exposure, you can also consider light therapy treatment. If this is of interest to you, I’d suggest booking this in with your porphyria specialist as soon as possible to avoid missing out on appointments.

Winter is one of my favourite seasons…not just because the other two are temperamental and anxiety inducing for me. I enjoy indulging in the colder months as a way of treating myself for having successfully navigated my way through another summer.

Welcome to our first British Porphyria Association blog!

Chances are, if you are reading this post, you or someone you know, has porphyria…welcome to the community. My name is Sophia and I have EPP. The BPA website helped me to diagnose my condition at the age of 24. Had it not been for the fantastic support and information at the BPA, I would still be calling my condition an ‘allergy’ to the sun!

Although the symptoms of the porphyrias are wide ranging, those of us diagnosed (or yet to be) with porphyria, experience similar mental health issues of isolation, lack of control and hopelessness to name a few; not all that far from symptoms of depression. As a child, I learnt to become an expert weather predictor, skilled in quickly assessing where the sun sat in the sky and calculating where shade would fall during summer months. I faced anxiety and worry, often keeping my condition from friends due to feeling different. With these experiences in mind, I am passionate about helping young people with porphyria dispel the stigma around this condition.

The BPA community make it our mission to encourage each other to face porphyria with a positive attitude, often pushing the boundaries of the condition (safely) to enjoy life with as few limitations as possible. One of our BPA members, Antony, who has EPP is a self-proclaimed dare devil who loves the outdoors. Antony has recently embarked on a gap year style tour around Malaysia, Borneo and Western Australia. I know! Impressive right?!

With this mindset at the heart of our charity, this blog aims to be a source of community for all the porphyrias. Our blog will provide you with fun and useful tips and advice on living with your condition, as well as focusing on the mental and emotional wellbeing of life with porphyria.

Why not take a look around the BPA website, connect with our community on facebook or get in touch if you have any blog post suggestions you would like to see next!