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Elizabeth

Sarah and Matthew’s phototherapy adventure

BPA Blog - Every Cloud....

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

BPA Blog - Every Cloud....

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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Custom Van Show: 9th-10th September 2017

For the fourth year running, Ray Lancaster and Jenny Coombs are organising the Revolution Custom & Classic Van Show in Skegness, to raise funds for the BPA. Van owners and enthusiasts will be coming from all over the country to show off their custom vans. There will be entertainment and competitions for adults and kids! Starts at 10am each day.

The event will be held at the Pine Trees Leisure Park, Croft Bank, Skegness Lincolnshire, PE24 4RE (Tel: 01754 762949). http://www.pinetreesholidays.co.uk.

Anyone interested in helping with the event/a stall can contact Ray on 07799 392 771 or magicoazulcc@yahoo.co.uk. If any business or individual has a raffle prize that they would like to donate, then please let Ray know.

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International Porphyria Awareness Week (IPAW)

22 April 2017 – 29th April 2017

After discussions with the American Porphyria Foundation (APF) and the International Porphyria Patients Network (IPPN), we are joining them in holding an International Porphyria Awareness Week (IPAW) from 22 to 29 April 2017.  We are planning on suggesting a number of fundraising and awareness initiatives that you might like to become involved in. More details of these will be circulated in early 2017 via our website and Facebook page, as they become available.

We feel this will help strengthen the impact that we can have, not only on a local level, but on a global level too.

We will endeavour to highlight the plight of those struggling with this condition using the media, our member’s personal stories, fundraising events, conferences, and any other means that we can.

Members like YOU, can help us to do this! If you have any ideas for awareness, publicity or fundraising that you would like to explore with the BPA, please do not hesitate to get in touch.

Money raised can be paid through Just Giving or cheques should be sent, with details of your event, to The Treasurer, British Porphyria Association, Rothlea House, 7-8 Quarry Lane, Butterknowle, Bishop Auckland, DL13 5LL.

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2017 Autumn Conference and AGM: Cardiff

Our 2017 Autumn Conference and AGM will be held at the Holiday Inn Cardiff North M4, J32 on Saturday 7th October 2017 (9.30 am to 4.15 pm), with the support of Dr Badminton and the team from the University Hospital of Wales, Cardiff. As always, we will have updates on Clinuvel and Alnylam as well as various other talks from doctors, nurses and patients about living with porphyria. There will be plenty of opportunities to talk with others affected by porphyria, as we plan to group sessions together to allow a specific cutaneous section and an acute section, meaning that people will be able to use a breakout room for informal discussions, instead of attending talks that may not be as relevant to them.

Please let us know if you would be interested in attending as, based on the popularity of our 2016 events, we expect places to fill quickly. Please forward the names of anyone wishing to attend with you to: liz.gill@porphyria.org.uk or call 0300 30 200 30 to confirm your attendance.  The BPA will send further information to those interested a few weeks before the actual event.

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