Cathleen Mouledoux

An EPP Family in Texas & Australia

Cathleen Mouledoux does not have EPP, but she knows the disease well because her daughter Celeste suffers from it.  The disease is in Cathleen’s husband’s family, but Rene was never troubled by it, playing outside all the time as a child without anything more than a sunburn.  Rene was only tested for Erythropoietic Protoporphyria until after he and Cathleen found out their little girl had EPP.

Celeste had always shown low tolerance for the sun from the time she was a baby.  The first time Cathleen noticed the problem Celeste was playing outside in dappled sunlight, mostly shaded by a large tree, and suddenly started crying inconsolably.  Cathleen remembers it clearly because Celeste was not a fussy child, and when Cathleen took her indoors, she saw that Celeste was browned on her nose and her cheeks, just from the short time she’d spent outdoors in the shade.  Celeste browned like that a few times as a child, and her skin would peel afterwards.  But instead of peeling like a sunburn, the skin would come off in big chunks.

As a toddler Celeste had a bad burning sensation in the skin on her hands when she was exposed to the sun.  Nothing Cathleen tried eased the pain, but there were no visible symptoms.  Then when Celeste was about four years old, she broke out in tiny little bumps that looked like bug bites after being out in the sun.  The family called them “spider eyeballs” and again Celeste suffered terrible pain with sun exposure.

When Celeste was 13 years old, her mother learned that two cousins had a disease called Erythropoietic Protoporphyria.  Their symptoms were pretty similar to Celeste’s—all three kids would experience dramatic swelling in their hands and faces whenever they played in the sun.  Cathleen took Celeste for testing and the diagnosis was made.

Not being able to tolerate outdoor activities as a child was hard on Celeste as the family moved around in the warm and beach-friendly American South.  Cathleen remembers her daughter going to the beach with a group of friends one day as a teenager, going along with her friends and getting major sun exposure, and coming home bright red with her skin hugely swollen and painful—her arms were dramatically swollen all the way up to where the coverage from her t-shirt sleeves stopped and the swelling and pain took six weeks to heal completely.

The one reprieve came when Rene’s job moved the family to Australia for several of Celeste’ high school years.  Sun protection is a big topic in Australian public health notices because skin cancer is a major problem there.  So the family found significant public awareness and acceptance of the need to cover up.  Broad-brimmed hats were part of the kids’ school uniforms, and kids’ bathing suits often offered as much coverage as shortie wetsuits.

Like other people with all sorts of diseases, Celeste has sometimes chafed against the restrictions imposed by her EPP.  Cathleen remembers her daughter going to the beach with a group of friends as a teenager one summer day, and coming home with every exposed portion of her skin bright red, hugely swollen and painful.  The swelling and pain took six weeks to heal completely.  But now Celeste is a young woman in her early 20s and doing well.  She knows what she needs to do to protect her skin from the sun, and she takes precautions to keep herself healthy.