A mini Interview with Victor about how he deals daily with EPP. Victor has made so many changes in his life he also serves as an administrator for the APF Facebook. His wife Sue also shares her views on this disease and how the two of them find comfort and joy despite having Porphyria. Enjoy reading all.
I was diagnosed with EPP when I was 6 I am now 43. My childhood was very tough. I had no one to talk to about my problem and I didn't understand it myself. People always looked at me funny and made fun of me because I couldn't play with them. I was very depressed as a child not knowing how I would survive and grow up to have a productive life. Now I have 3 kids and a new wife. They all try to understand but only "WE" with EPP truly understand each others pain. Life is not easy hiding in the shadows. There are many things I cant do because of my disorder. I missed most of my kids sports, parades and family events. Today was the first day I felt the burn of the sun on the drive into work. I suffer at work day to day as it is very hot and uncomfortable in the shop. When I get home I try to cool off and relax. My wife and kids are very patient as I can be very moody when I have reactions. My Passion is fishing. This is very difficult to do when you cant be out in the sun. The best time for me is early morning or late evening. I am always covered up. When they find a cure I plan on fulfilling my dream and become a professional fisherman.
Victor A. Mejias
It is very hard to watch the person I love, my husband have to hide from the sunlight. The sunlight that brightens my spirits, the sunlight that warms my body, the sunlight that I enjoy so much. It makes me very sad to know that my husband is held back from doing things that he loves because of this condition. It also breaks my heart that there are things that he will never experience because the pain he would suffer as a result would be too great. It hurts me to see him hurt when he is “bothered” by the sun. The physical and mental anguish he goes through because he pushed to do something we, people without EPP most likely take for granted. It is difficult to think about my husband as a child, not knowing why he is in pain, not being able to explain what he is feeling and everyone around him unable to see any kind of evidence of why he is in pain.
One of the positives I have seen is my husband’s display of patience, kindness and compassion for others with EPP. He has listened to others’ stories and he has given very helpful advice/suggestions to mothers of children with EPP. That was truly beautiful!