Skip to main content

Lauren Fabean Erythropoietic Protoporphyria (EPP)

Lauren Fabean

Erythropoietic Protoporphyria (EPP)

My name is Lauren Fabean, and I am a sun-hater! I enjoy rainy days and feel an immediate sense of relief when I see "considerable cloudiness" in a weather forecast. 

I was diagnosed with EPP at the age of 12. After enduring the worst reaction of my life while participating in a weekend softball tournament (I really hated playing softball, too!), my mom started seeking answers to what was happening to me and why, and the journey to my diagnosis began. 

It took me a long time to get used to having EPP, and to learn what preventative measures worked for me. I also had to learn how much sunlight I could handle before a reaction set in. This was really hard. 23 years later, I still have days when I think I will be ok in a bit of sunlight, and the next thing I know I'm kicking myself for allowing a reaction to occur. 

This is what happens to me when I am exposed to too much sunlight for too long of a time period: I feel an intense burning sensation in my hands, feet, and/or face. When trying to cool the areas, I feel an extreme tingling sensation if I am applying something that is too cold. I need to find a happy medium. My skin is also very sensitive during this time; a simple bump or scrape against an object leaves a lasting, uncomfortable tingling sensation. A bad reaction can take days to go away. In the summer, even if I'm very careful, I have come to terms with the fact that I will always be living with a slight reaction here or there. Unless I want to just hide inside every day. 

What works for me: I am a firm believer in sunscreen, not just because of EPP, but because the sun is so damaging to our skin and it's so important to take care of it. I have spent a lot of money on good clothing with SPF and hats, and I can be seen carrying an umbrella (my "sunbrella" as I call it) at times. The best thing for me to do is simply stay away from the rays. 

I struggled a bit growing up, and did feel lonely at times. However, the worst part of having EPP in my adult life is the fact that I cannot play or swim with my daughter in the summer. I get to sit on the sidelines, hiding in my shade, while I watch my husband enjoy all of those things that I wish I could do. 

This disease has taught me a lot. Most importantly, I realize that I am very lucky. There are many others who suffer far worse than I do when exposed to sunlight. EPP is mostly a huge inconvenience in my life, but it’s something that I’ve accepted. So, if you see me running desperately to the shade or hiding under my hats and umbrella, don’t feel bad for me or think I’m weird. That’s just me living with my “sun thing.” 


Popular posts from this blog

Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!

Meet Shadow Jumper Mitchell Felts

Meet Shadow Jumper
Mitchell FeltsMitchell Felts, age 12 How old were you when you were diagnosed?
I was 9 Years old. Do you remember your first flare/reaction?
No, I do not recall my first flare & reaction. What did it feel like to you?
It was tingling bad on my skin. What things help you feel better? (cool water, ice, shade, bath, clothes)
It helps me when I use cold rags and ice packs on my skin. How long does it take before you start to feel better?
Sometimes, I start to feel better after the first day, but sometimes it takes 2-3 days or longer to feel better. What kind of clothing/trends do you wear when you go outside or in bad lighting?
I can use long sleeves, hats and umbrellas. What is your most favorite sport to play or watch? Do you play it inside or outside? During the day or at night?
I enjoy playing baseball late in the day and it feels great to play at night. What ways are you able to adapt to do certain activities outside?
I must cover up, its hot outside so I must take breaks to c…

Medical Moment: Patient/Physician Relationship

Medical Moment: Patient/Physician Relationship
We all want a great relationship with our doctors, right? You, as the patient have a responsibility to establish a solid rapport with your physician and other members of the healthcare team. This can have a positive impact on the quality of care and better access to treatment. Yes, there could be a stigma associated with having Porphyria but don’t let it stop you from receiving the proper treatment that you deserve. Communication is KEY! Below you will find some key elements and tips that will not only prepare you for your visit with your doctor, but also build a strong relationship.
Here are a few tips for your doctor’s visit: 1. Plan – Be prepared! Prepare your questions and concerns beforehand. You want to be courteous of your physician’s time with you. 2. Make a list – Make a list of your questions, concerns and any other relating information. 3. Communication is key – Make sure that you understand fully what the doctor is explaining/a…