This is National Ichthyosis Awareness Week. It's a disease you may not have heard of, but affects more than one million Americans.
There are 28 different types. Most of them are genetic disorders. All types of Ichthyosis result in dry, thick, scaly or flaky skin. The severity of the symptoms vary widely. The mildest can be mistaken for dry skin. The most severe can be fatal.
Doctors diagnose the disease by looking at the skin and confirming it with a skin biopsy. There is no cure. Treatments include creams and lotions to help hydrate skin.
A central Nebraska family knows all too well about Ichthyosis. Eliza Fredrickson of Heartwell was born with it.
Eliza Fredrickson is halfway through the terrible twos.
Lacy Fredrickson, Eliza's mom, said, "Mommy. I do it myself. She's at that age where you better let her do it or she throws the biggest fit in town. Typical two year old (laughs).
What she's gone through since the day she was born is anything but typical. Thick, scaly patches of skin covering her body may look like a bad sunburn, but it's actually Congenital Ichtyosiform Erytroderma. C.I.E. is a rare disease that affects one in 100 thousand people.
"We've done every kind of lotion possible. I'm at the point where I mix my own," said Fredrickson.
Eliza is used to her daily rub downs and her mom's mix seems to be working. Eliza sheds as much skin in a week as most people do in a year.
Her skin still cracks. Open sores and blisters break out on her feet.
"She has flaking in her ears. Her ears have to be cleaned out constantly. On her head, the
scales get so thick you try to remove them and you pretty much take out a chunk of hair along with it," Fredrickson said.
The of it, though, might be her eyes. Lacy's working with several dermatologists as she searches for relief.
Fredrickson said, "They sag. Her skin pulls it and they fall down and so they get red and irritated and water sits in there."
Despite the discomfort, Eliza is living life in full swing.
Cassidy Holmes, Eliza's Aunt, said, "When kids stare, she just smiles at them and it's nothing and I think she's going to need that personality when she gets into school systems because kids are going to look and make fun of her. But, I think she's going to be fine."
While there's no cure, there is hope.
"We deal with what we can and what we can't we hope the doctors can figure something out," added Fredrickson.
It turns out that Eliza's parents are both carriers of the disease. They have not yet gotten their two boys tested to find out if they are carriers.
There is an Internet support group for families affected by Ichthyosis... www.scalyskin.org