Pennsylvania Office Welcome
My name is Prentiss Ward. I am 36 and a single mother of a six year old son and 17 month old daughter. I was diagnosed with PXE when I was 19. I had been told by my pediatrician since my freshman year of high school that I was having some type of allergic reaction. I used all these creams he prescribed yet nothing happened. I finally just figured, oh well, I guess this rash is here to stay.
It didn't look that bad so I didn't get concerned about it until it started to spread and get more pronounced. That is when I went to a dermatologist. It was very overwhelming to be 19 and told you have a disease in which there is no cure and that I would lose my sight and even worse, probably not live very long. Years ago, and sometimes now, I feel like a lab rat because when I tell a primary care physician or dermatologist I have PXE......ON COME THE ENTOURAGE!! But, it doesn't bother me now because I realize most doctors have only seen the text book case of PXE and I don't fit that mold. So, it gives me a chance to educate them and hopefully they can help someone else. I do have angioid streaks but my vision is still good and so is my heart.
I moved to the Philadelphia area in September from Atlanta. In Atlanta I received numerous calls and emails from PXE patients and concerned family and friends of those affected by PXE. I also sent materials to some pediatricians, dermatologists, and primary care physicians in my immediate area.
Since moving to Philadelphia I have been working as a Children's Environmental Health Coordinator for the Environmental Protection Agency. I hope to be able to make contacts in this job that can also help with the mission of PXE International.
I hope to meet you all some day! Have a blessed day.