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Every Cloud

Sarah and Matthew’s phototherapy adventure

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Living with porphyria requires a huge amount of bravery. For those of us living with Erythropoietic Protoporphyria (EPP) stepping out into the sunshine takes courage and strength. One of the treatment options available to us is phototherapy which requires patients to stand in a ‘walk in light box’ where narrowband UVB fluorescent light bulbs are used for a few minutes at a time and increased over each session. Carefully exposing the skin to artificial light allows it to thicken and build up a tan which can act as a sun block.

Sarah and Matthew, two young people living with EPP share their experience with phototherapy and take us through the many emotions experienced when trying phototherapy for the first time…

 

Hi. My name is Sarah Chapman. I’m fourteen and I have EPP.

I have a little brother called Matthew and a big sister called Rebecca. Matthew has EPP too and Rebecca doesn’t. Recently, me and Matthew finished phototherapy at the RVI in Newcastle.

 

Phototherapy is when you go into a big cabinet and a nurse turns on a controlled amount of UV light. It is a very low dosage at the start for a low amount of time and it gets higher and higher as the treatment progresses. The aim of phototherapy is that our bodies build up a resistance against UV light so that we can go outside for a short period of time without needing to wear our hat and gloves the whole time.

When our doctor first recommended phototherapy Matthew was excited to try it but I wasn’t sure. At first, I refused but as time went on, I warmed up to the idea. When we first went to see the lady in charge of phototherapy, she told us how it would work. We then went and met the nurses that work there. We then looked at the cabinets and I felt overwhelmed and I got a bit upset.

At the first appointment, on a Thursday, I was convinced I wouldn’t be able to do it. I got ready to go in and then I got really nervous. I got in position in the cabinet ready to go with my Mam standing just outside and Matthew was in the one next to me with my Dad. Just as the nurse switched mine on, I heard Matthew shout “NO! STOP! I CAN’T DO IT!!!” I managed to do mine and I got out and went to see Matthew.  He said he was frightened and didn’t want to do it.  One of the nurses thought it would help him by thinking of the sun on the beach. Clearly the last thing to suggest to a boy who has spent the last seven years avoiding sunshine! We went home and Matthew had till Tuesday to decide if he wanted to do it. I told him that it wasn’t painful just warm and tingly!!!

On Tuesday, Matthew decided to do it. I went first to show him that it was safe and then it was his turn. He did it! I was so proud of him. The nurses gave me some aveeno moisturiser to help the places that were itchy. Matthew got some certaben ointment. We put the cream on all of the itchy places after we got out.  As the weeks went on, we needed our creams less and less. Also, I started to get my first tan ever and I was very excited!!

We went to all of our appointments and the dosage got higher and longer as time went on. Eventually, we got to the last one and we said goodbye and thank you to all of the lovely nurses and we went home.

Now, when it isn’t super sunny, we put on our sun cream and we walk to school without wearing our hat and gloves because we can just put them in our bags!!

I know this isn’t a permanent solution for us but we hope it will help us enjoy the summer. We have already made arrangements with the hospital to go back in February to start another course of treatment.

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Enjoying Winter: Our Top 5 Tips

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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.

 

  1. 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.

 

  1. 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?

 

  1. 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?

 

  1. 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.

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Every Cloud Nov’18

BPA Blog - Every Cloud ....

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!

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