Adventures,  Life with EPP

A Note to My Fellow EPP Friends

Hey! I just wanted to sit down and write to you. Just as if we were sitting in a coffee shop enjoying a fancy coffee and talking. It is so helpful talking to someone else with the same diagnosis. You actually get to have a conversation with someone who completely understands what you are going through. It is helpful to discuss your struggles and horrible reactions. As well as how you choose to cover up and stay protected from the sun.

You can even connect over the humor of non-EPPer’s (ha I know not a word, but I like it) that we hear on a daily basis. Like when you tell someone you are allergic to the sun and they say, “oh I know someone with that” or, “oh so you are like a vampire.” When they act like we are overreacting over a sunburn on pale skin. When in actuality it’s like 1000x worse, more like a sunburn with hot oil dripped over it while we sit by a bonfire. That’s more like it. I know we all wish we could have just a sunburn. That would be a piece of cake, considering our high tolerance to pain. Wait I have one more to share a laugh over. When every inch of skin in covered up and you are outside on an 80 degree day and someone asks if you are cold. Why, yes I’m freezing can you get me a blanket.

In all seriousness though it is not fun hearing that on a daily basis, but speaking with each other we can laugh. We are the normal one’s then. I kind of like being unique though. These non-EEPer’s who we call normal, are kind of boring. What do they have to share? We get to share our uniqueness. But I believe we should do more that just share it. We should completely rock it, like a model on a runway.

OK, but why should we rock it? I know it isn’t fun, it’s painful, annoying to cover up, causes lots of anxiety leaving our homes (safe zone) and at times a complete fun sucker. The list really could go on and on.  I don’t know about you though, but I will not let living with EPP define me. My name is not EPP, it’s Cortney. I will do and achieve what Cortney wants to do and achieve. Not stay confined to a tiny box of comfort that EPP has designed for me. We are made to push past our limits and live any life we choose. Yes, our disease affects our bodies but our minds are so strong. We need to have a mindset to push past the limits of EPP and live a fearless life. A life we truly love.

True story about me. Two things to be honest about. One I hated covering up and looking different, so I either missed out on the activity or got a painful reaction. Two, I hated telling people I was allergic to the sun. I didn’t tell them unless I had to. I played indoor sports and kept busy during the day. I would then go out at night. As you can tell now I am the complete opposite and will now cover up ad tell everyone. We can’t currently change or fix our disease so we mine as well rock it. Find new ways to get outside both day and night. Do something you thought was impossible. Try a new activity, cover up in public during the day and post it to facebook. There is no need to stay confined.

I know we currently have a drug under review with the FDA and clinical trials going on. It is exciting and so hopeful that there is help out there for our future. I just recently went through my screening to be included in a clinical trial. It is scary because we have to expose ourselves to the sun knowing the pain it causes. Especially when there is not a 100% chance you will get the real drug. You may get the placebo and that is perfectly fine too. We have to take the good and the bad to get greatness in the end. Taking chances, I would rather have the placebo than not being a part of the study at all. Even though I would absolutely love getting the real deal and shedding my layers outside.

We need to all sign up if medically able. There are some that physically are unable to sign up. Take the chance and sign up for them. The more interest we show in making a difference and finding a cure then the more that will come our way.

This is starting to get long so I am going to sign off for now. However, know that this part of my site will always be here for you to refer to. As well as I will always be here to talk as well. Stay tuned to follow the journey of my clinical trial. I would love to hear yours too!

Wait, one more thing. If I can defy the odds and push past the limits of what EPP tries to make for me…you can too. So I am challenging you to try something new this week. Cover up and get outside. When you complete the challenge leave a comment below so I can celebrate with you!! Woohoo!!

 

xoxo,

Cortney

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2 Comments

  • Claire

    This is a truth bomb. Thank you for sharing your story, sharing your wisdom, and challenging the rest of us to own our porphyria. This speaks to me deeply. I have AIP and stress will absolutely trigger symptoms and an attack, however I am learning what my limits might look like when I minimize triggers in other areas of my life. I will take your challenge as I am navigating what it means to be a distance runner and live a life of caution + prophylactic heme treatments!