My Story

Some history on my life is needed to give some perspective. Growing up I wasn't always allergic to light. My condition didn't start until I was in my mid to late 20's. I was born and raised in Northern Indiana. I was a typical child, active, creative, and lively. I rode bikes, played outside, was a Girl Scout, and I loved to swim, play volleyball, and enjoyed music and art. As a teen I was always either int he pool or outdoors at  marching band practice. I waa medium complected and always has an olive tone to my skin. As a teen I had acne like most, but that was my only skin issue. I rarely burned in the sun and if I did I healed quickly. Basically you could say I was a normal girl who was happy and healthy, and throughout my college years I lived a normal life too.

In February 1999, I met the man of my dreams and life John, he is wonderful and supportive in all I do. We dated for about 4 and a half years before marrying in 2004. Our wedding was held outside at my parents home, and it was a beautiful ceremony.

The first issues with my skin began in Summer 2002. I began noticing that after being outdoors, in the direct sun, I would end up covered in hives. They were teeny tiny little dots and were so close together they would make my skin look bright red like a sunburn. The hives would only appear on skin that was directly exposed, and itched like nobody's business. After I would get out of the sun they would disappear after a couple of hours. The first couple of times, I didn't think much of it because it happened so rarely and would take hours to show up. I figured it was heat rash or something similar.

After my wedding in September 2004, I was becoming concerned the rashes were getting more frequent and were getting more intense. I decided to ask my doctor about it. He said that I was probably just heat rash or I was getting into something that I was allergic to. I wasn't satisfies with that answer. I had read that birth control can cause rashes, so I asked my OB/GYN about it, she didn't think the "Pill" was the cause. So I stared researching and after having this issue for 4 years I made an appointment with a a Dermatologist. He didn't know what the issue was either but did test me for Lupus and that wasn't the cause.Back to researching I went. I found a dermatological website from Europe, and was looking at the pictures and found the term "Poly-Morphic Light Eruption" or PMLE, I had all the matching symptoms. With that I printed out the information and called an allergist. I found one that would see me with out a referral. I took all the information with me and told the doctor what I thought it was and that I had PMLE. The doctor agreed and I was diagnosed. After three or four years and four doctors I was happy that my condition had a name. The doctor actually told me at the time that I knew more about the disease than he did!

So, my life changed. Anytime I was outdoors I had to wear sunscreen and stay covered. At first that was the only changes PMLE brought to my life. Unfortunately over the years my PMLE didn't stay mild. Eventually my reaction time shrank from hours in the sun to only about 5 minutes before I was broke out. That was even with being on an antihistamine and using sunscreen. Back to the doctor I went.

In 2010, my condition was bad enough that I could go into anaphylactic shock if my reaction became severe enough. So, my diagnosis was increased from PMLE to Solar Urticaria (SU). So my life really changed. I began treating all of my clothing with "sun guard" by Rit. Wearing sunglasses outdoors, sunscreen year round, and anytime I was outdoors I always had to be covered head to toe. It also meant that I had to start carrying an Epi Pen everywhere I went,  and monitor my environment.

Now, don't let my condition scare you or depress you. I've lived a wonderful life with many life experiences. And for people with PMLE and SU, many of them live completely normal lives. For some the disease even goes away completely or gets better over the years. I am a rare case.

Recently in September 2013, my condition went to the extreme. I am currently researching the issue. I have suddenly and without warning become allergic to all light. Natural and artificial. We don't know what is causing it, but I am now reacting to florescent and incandescent light. Also light from televisions, computers, and smart phones. It effects me in a number of ways physically, and within minutes.

I am going to be traveling to Detroit, Michigan just before Thanksgiving to be tested for light allergies and to discuss my status with Dr. Henry Lim. I am nervous, scared, and excited all at the same time. I have faith in God that HE will lead me to where I need to be. I believe I was meant to write this blog and teach people about this rare condition. Each week I will have something to say, so stay tuned!

"Joyful is the person who finds wisdom, the one who gains understanding. For wisdom is more profitable than silver, and her wages are better than gold. Wisdom is more precious than rubies; nothing you desire can compare with her." Proverbs 3:13-15