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Posted on 25. August 2016

PI and Sun Exposure: My Lesson

By Joanna Tierno

As a kid growing up, people would comment on my dark hair and pale skin. “She is so fair!” they would say, looking at my mom with her olive complexion and trying to figure out where my light skin came from. I didn't really know what it meant until I read Snow White. I loved that story, except for the part about the jealous evil queen. “Maybe it’s not good to be the fairest?” I thought. How wrong I was! I hope my experience about learning to love my own skin will help others.

As I grew older and my primary immune deficiency disease (PI) caused me to be sick over and over again, I started to see fair skin as a sign of weakness or sickness. I looked forward to summer and to getting a tan. People would always comment about how healthy I looked. My grandma, who was a natural blonde with light skin, also loved to tan. Together, we would slather on tan accelerators and hit the beach. Back then, people didn't know how bad tanning could be for you. In my 20s, I used tanning beds so I could look healthy all year long. I wasn't. In fact, I was in about the worst health of my life, and doctors couldn't seem to get to the bottom of it. The tanning felt good, and I thought it made me look better, even if nothing could make me feel any better.

Even after my PI diagnosis, I continued to tan. Without much information about my disease, I had little idea at first that I was at an increased risk of malignancy, and even when I new, I cut back but still continued to tan mostly out of habit and the belief that darker skin was more attractive and made me fit in more with the normal, healthy people. I also felt entitled to be outside as much as I wanted in the summer, since winter months I tend to be a bit recluse trying to avoid catching the flu or other unwanted viruses or infections. In the summer, I could really feel free to be normal, relax and live a little. Outside events are so much safer than breathing in everyone's germs indoors in the winter. I could feel free to accept invitations to events and parties without hesitation. I even started raising awareness about PI, mostly with outdoor information tables where I would be in the sun all day.

At 42 years old, I was diagnosed with a rare skin condition called porokeratosis. There are different forms of this condition, but mine is likely caused by a combination of a low immune system and sun exposure. It can be precancerous, so besides the itching that at first kept me awake many nights (think of chicken pox that never goes away), I also had to be concerned about cancer. Most of the treatments for porokeratosis made it spread and worsen, not improve, so I have been through a lot just to get my skin stable again. I always thought if I got skin cancer or precancer, they could just remove it. I never pictured myself stuck fighting a widespread condition for the rest of my life.

There is no cure for porokeratosis, and as far as I know, there is no research conducted about it in the U.S. I am doing OK now, but I know from experience that can change anytime. I pray everyday it won't. I am now doing all I can to protect and heal my skin. I am a model dermatology patient. I don't spend time outdoors during peak sun hours, I wear lots of sunscreen and protective clothing and I have medication I must apply two times a day, as well as a whole bunch of oils and creams I feel help.

It’s a whole new lifestyle. To be honest, it made me very sad at first. I live near the beach, own a pool and love laying in the sun. But, now, I am used to my new routine. And, I am getting to know and love my real skin color. My paleness can make me look dramatic, especially with the right clothes and makeup, and I am just happy to see my skin calm and happy again. To me, all healthy skin of any color is now beautiful.

I hope my story can convince others to take care of their skin before they experience a health problem like I did. Your skin is your largest organ. When it’s unhappy, trust me, you are too. While it ought to be, having PI is no free pass when it comes to cancer or precancer. Lightning can and does strike twice sometimes. You can enjoy your summer and still protect your skin - especially if you start before that damage begins.

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