| Erythropoietic Protoporphyria (EPP) |
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Hello, I am glad you stopped by for a visit. You may be here because you have EPP or maybe you know someone who has EPP, like a brother or sister or a friend, or maybe even your mom or dad. I am now going to tell you more about EPP. Erythropoietic
ProtoPorphyria!
Hey hello what did you say? What for weird and difficult word is that! Why don't you try to say it out loud. Erie Um Pro what? Difficult isn't it! You can hardly pronounce it. You know it doesn't matter because your mom or dad probably can say it right either. Alot of people call it therefore EPP. It is a short name instead of a long and difficult word. Just look at the red letters above, and you will be able to see where the EPP comes from. Okay, but what is this EPP then? If you have EPP, you always have to wear a cap, gloves, sunglasses when you want to go outside. You also always need to cover your arms and legs. Someone with EPP must often wear a shirt with long sleeves and long pants. Even in the summer, they must cover up! Why do they have to do that? Well, someone with EPP gets a reaction from the radiation of the sun. They get alot of pain. The pain is like you've just walked throught thousands of stinging nettels. The pain doesn't just dissappear. It can stay for a long time, from a couple of hours till the next day. So the sun makes you hurt? That's correct. Some children call it the sunshine sickness. It is a lot easier to say and remember than EPP. You know someone with EPP just has to be careful with the sun so that they will not have pain. Still, someone with EPP is just like everybody else What do you do when it hurts? Someone with EPP wears a hat and gloves to protect themselve. When it hurts a lot, sometimes you can cool the pain with cold washclothes or you can lay on a cool spot. Can I catch EPP? You have EPP from the day you are born! Sometimes you find out a few years later. But you can not catch EPP, it is not like a flu. Your body is made up of cells and DNA, like the building block of a house. You can only get EPP if your mom or dad have the one EPP building block. Even if you mom or dad have this block, you still only have a small chance to get EPP. You know if you have EPP, or you know someone who has it, we are just like other people. I am a mom myself. My daughter and I have EPP. You know what we do? We wear cool hats where other people are envious of. We decorate our hats just the way we like it and we have a lot of fun. I also make our own gloves in different colours and decorations. If you have EPP, you have to learn to live with and why not choose to make it fun at the same time? If you have any more questions, or you would like to tell something yourself, ask your mom or dad to help you send us an email. We will reply to you as soon as possible. |
