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…
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.