Hey I’m Cortney and I’m allergic to the sun…yes you read that correctly. I have a rare disease called erythropoetic protoporphyria (EPP for short) in which I can not tolerate UV rays. Over 15 minutes of direct sunlight causes me intense pain which lasts for days. Despite my disease, I have a true love for being adventurous and outdoors. Yes, I have this disease that challenges me every day but I will not allow it to limit what I do in life.
I started this blog to inspire others to live their best life. My mission is to show people that no matter what challenge or fear you may face, your mind is your only obstacle. Life is what you make of it, tear down your walls and challenge your limits and you will be amazed at what you are capable of doing!
I’m a full time physical therapist assistant in an outpatient rehabilitation setting and I am also a fitness instructor at Pure Barre. I have my bachelor of science in which I majored in exercise science, giving me a good bit of knowledge in health and fitness. Fitness plays a huge role in my life, you can find me running, lifting weights or tucking at Pure Barre! I believe nutrition is just as important, what you put into your body is what it will give back you, food is fuel to achieve the best you. If you haven’t realized yet, I am a big adventure junkie, I feel truly alive when I am outdoors exploring what this beautiful world has to offer; fishing, snowboarding, hiking, camping, kayaking and whatever else involves fun and being active.
Life with Erythropoetic Protoporphyria
It’s a rare disorder in which my body has a genetic defect in the enzyme responsible for metabolizing protoporphyrin, which causes me to have an extremely high level or protoporphyrins in my blood. I believe a normal amount is 0-30 and I have hundreds and sometimes over 1,000. The excess amount gets excreted by the red blood cells into the skin, which than reacts to sunlight causing a chemical reaction which causes intense, localized burning and itching. Personally I can tolerate about 15-20 minutes of direct sunlight before a reaction occurs (some days it’s less). Nothing is visibly seen on my skin (but can for some patients) but the pain is absolutely intense. It feels as though someone is burning my skin with a torch and shoving a million needles into me. Since it’s in my blood, its been described as a chemical burn under my skin that I can’t get to, thus causing the burning and itching. For me, the reaction typically lasts about 3 days and nothing eases the pain. The only way to avoid the pain is to avoid the sun, which is difficult considering it rises every morning. My symptoms started at age 2 and I have lived with it since and will continue to, as there is no cure currently. To learn more visit http://www.porphyriafoundation.com
- I love to fish and hunt
- I packed a tent and flew to Alaska to camp for 2 weeks
- Completed 2 half marathons and currently training for my 1st full marathon
- Huge fan of peanut butter
- I’m a short girl and drive a BIG truck