My daughter Rebekah has Erythropoietic Protoporphyria. We live in the Grand Rapids, MI area.
Rebekah was about 13 months old when she first started having symptoms. We were staying at a summer cottage on Lake Michigan. I put sunscreen on her and we went outside to play in the sand and swim. Late that afternoon she got real fussy, and by evening she was screaming and crying. We thought she was overly tired and gave her some Motrin, but she didn't sleep at all that night.
In the morning, Rebekah's face and hands were swollen and red. We could not make out the bridge of her nose because of the swelling and she couldn't open her eyes or move her fingers. I called Rebekah's pediatrician and he wanted to see her right away. At first, her doctor thought she was having a reaction to the sunscreen I had used, so we tried another kind and went back to the beach!
Again, Rebekah started screaming and crying, and we tried everything to calm her down. After several weeks and trips to the pediatrician with no answers, we asked to be referred to a dermatologist. She took one look at Rebekah and knew-Dr. Patel had seen a case of EPP during her residency training-how lucky for us! After the blood work came back, Dr. Patel explained what EPP was, started Rebekah on Lumitene and found the American Porphyria Foundation for us to join.
Rebekah is now 10 years old and deals with her EPP very well. Usually in the spring she gets frustrated, wanting to be "normal" so she can be outside with her friends and go on school field trips. She usually helps in the school library or office instead of going outside at recess. Fortunately, the children at her school are very supportive and protective of Rebekah-the other kids even tell me when I help out at the school if Rebekah has been outside without here hat or without sun screen.
Because Rebekah didn't remember her first bout of EPP, she wanted to see if it would happen again, so we let her go out for a very short period of time. That evening the burning started, her hands and face turned red and puffy and she was in a great deal of pain. Now she understands the seriousness of her condition.
We have learned what works to protect Rebekah by trial and error. Even if the sun isn't out, rays can still come through-when sitting in the shade while going fishing, the sun reflects off the water, and in the winter it reflects off the snow-not a good thing! Riding in the car without tinted windows or sitting in the house in the sun light can also cause Rebekah's EPP to flare up.
We have shared educational material and the APF DVD with our physician and the clinical staff, and with our family. The APF has been a great resource and support for us.
Jan and Bill Jones
Byron Center, MI