PXE and Art

Kim Griffiths was diagnosed with PXE at the age of 13 but was told that the strange skin texture on her neck was simply a "skin condition" since there wasn't much else that could be done to prevent the disease from manifesting. Many years later at the age of 38, PXE blinded her left eye and now in her mid 40s Kim is trying everything possible to save her right eye. She never really understood the term "fighting blindness" because through her journey, it's become more of an exercise of transformation, acceptance, and faith. In some ways, Kim feels that this disease made her wake up to her life and realize how precious each day is. From time to time, her natural surroundings inspire her to write haiku poems, a 3-line Japanese poem consisting of 17 syllables where lines 1 and 3 are 5 syllables, and the 2nd line is 7. This type of poetry is a method of meditation and Kim uses this art form as an outlet to channel her feelings about her experiences.

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Jessica Harper was diagnosed with PXE as a child and today is an active board member of PXE International. An actress, she has extensive theatrical credits ranging from movies and tv shows to Broadway productions. Since 1994, Jessica has published eleven children's books and seven children's music albums. In 2010 she published The Crabby Cook Cookbook, a collection of humor and recipes. She is an active blogger and Twitter user, as well as a columnist for PXE International.

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When I was 24 and working fulltime on a master’s degree, I happened to put my hand on the back of my neck and felt some bumps. That was over 30 years ago. I thought I had some sort of rash. I’m sure many of you have experienced the parade of interns brought in by your dermatologists and ophthalmologists to guess your condition.

When I learned about everything that could happen as a result of PXE, I had to make a decision about how to live with a condition that could affect my appearance, my health, my eyesight, my lifespan. My way of coping has been to remind myself, “Today I’m okay. Whatever happens tomorrow, I’ll be able to handle.”

I’ve been grateful for the PXE forum, which I first signed on to with dial up. Remember that chalkboard-scraping sound every time you tried to get on the internet? Thank God for the Terrys and everyone else associated with the organization. Knowing that there are people in my corner--seeking answers, sacrificing their personal lives-- to help those of us who have this condition, has helped me cope.

Of course my eyesight is of concern as a writer, but I am fortunate that I had a wonderful example in my father who was legally blind from macular degeneration. The way he managed with his functional eyesight was remarkable. If I lose my eyesight, I also know that there is technology that will continue to help me write the stories I was put on Earth to tell.

And you know what? Today I’m okay.

Child of the Mountains will be available from Delacorte Press, an imprint of Random House, in April 2012.

At 7 years old, Elizabeth Terry was diagnosed with PXE. She mostly just thought it was a funny long word. She spent hours drawing bugs and trees as a child. In college she majored in Art and Design. Elizabeth loves to paint, draw, sculpt, and most of all take pictures.

Elizabeth is dedicating a few years of her life to furthering PXE International's mission as Executive Director of the organization. Even though the days are long and hectic, she still makes time to go out with her camera. She enjoys all types of photography but gravitates to portraits and editorial fashion photography.

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In 1996, Kerri Wilson was diagnosed with PXE. In 1997, she lost her vision after a retinal bleed. Kerri turned to art therapy as a way to work out her frustration and anger, and ended up finding a lifelong passion. Pottery has brought much joy to Kerri's life, a joy that she wishes to share with others. "I like to do very whimsical pieces, that are very brightly colored, and they tend to make people smile and laugh and bring joy to their days, and that really is gratifying to me."

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