News 12 at 6 o'clock / Wednesday, June 1, 2011
AUGUSTA --- An estimated 300,000 people in the United States have to deal with something called scleroderma. If you've never heard of it you are not alone, some doctors did not realize that's what one young girl was battling until she was brought to MCG Children's Medical Center.
Alyha Williams seems like any other ten year old. She doesn't like math, she's into art and Disney shows, but when you look at her scars you realize there's a different story behind the curtain.
"It actually started when she was about four years old. We noticed the discoloration of her skin," said her mom, Fabrege Williams.
Alyha went to a dermatologist, and other specialists who couldn't pinpoint what was wrong. It took doctors at MCG to step in and find out. It's tough for Alhya's mom to look back on the moment she found out. Now three days out of the week they make the drive from Savannah to Augusta for Alhya's sclerodema treatment.
"Sometimes I get scared because sometimes I don't like when I do it. I am tired sometimes, just coming up back and forth here," explained Alhya.
Dr. Rita Jerath is an associate professor of pediatric rheumatology and she explained, "This is an illness that is very very difficult to follow. You really don't have any labs you can follow. A lot of times it's the visual part of it."
Scelroderma affects Alhya's skin and connective tissues. Inside, the fibers that support the rest of her body are hardening and tightening because of too much collagen production.
"It started to tighten, started to get hard where she was not able to use that muscle," said Fabrege. "She would wake up with headaches, she would wake up with her whole body being completely stiff. She'd be in the fetal position where she couldn't move at all."
Alhya shared, "I feel bad because sometimes I wish I never had it."
For a ten year old getting dressed in a hospital gown isn't as exciting as getting dressed up.
"Over the years Alhya has had multiple other areas of involvement as well. This has made us treat her very aggressively." said Dr. Jerath.
Alhya's treatment includes doctors peeling away part of her skin to relieve tension. She's even had surgery to stunt growth in one of her legs to make walking easier, but it was her photo-therapy sessions that scared her. To get around that doctors played Lady Gaga music to put her at ease.
Fabrege says, "The doctors here are amazing. I cant express my gratitude enough to them you know how excellent of a job they do of making her comfortable.
Alyha has been treated at MCG since 2006. Dr. Jerath says it's unpredictable as to what will happen through her teenage years into adulthood, but they will be tracking it closely.