Regulars will know what that is, that I’ve had it since I was a little girl and had to shelter out of the sun when everyone else was having fun down on the beach.

I used to just say I was photosensitive but in 2016 I went to a specialist and finally discovered that I have a thing.

And that thing is EPP.

What does it mean? Well, my body doesn’t make an essential enzyme called ferrochelatase, which uses things called porphyrins to help make blood. 

One of my parents basically had to have a missing gene, and the other one a faulty gene, for me to end up with it and no one else in my family has got it.

I basically can’t stay in the sun as I have a buildup of porphyrin plaque inside my capillaries because they don’t get used up. Extended violet light exposure explodes the plaque and my hands puff up and feel like someone’s ironing my skin. So there you go!

You can find out more about having a Fibroscan to check for liver inflammation here.

This happened when I was out for too long around about 2015. Most years I avoid it because I just just stay out of the sun. One of the reasons why my skin is not bad at all for 62!

Every cloud has a silver lining… 🙂

So whilst I missed out on lots when I was growing up, and more when I was raising my children because I could never go in the sea with them et cetera, I don’t look too bad now LOL! 

Bottom pic when I can feel it coming on, top pic is afterwards once things have got bad and it feels now like someone’s ironing my hand!

Bearing in mind there’s only 250 people in the whole country that have got EPP, it’s unlikely there will be a cure but the exciting thing is that this time round the doctor I saw who filled in all the tick boxes this year, said that there may be the chance to be part of a trial next year for a tablet you take and it helps against the effects of the inflammation caused by an episode. So you never know, I might one day get to finally go diving in the Egyptian seas before my time is up!