Two girls lean on each other for support against a rare disease
By Ryan Stotts
La Crosse Tribune
LA CRESCENT, Minn. — Sarah Kratt lives with pain every day.
"A lot of people don't get it because I'm always smiling and happy," she said.
The 14-year-old, who lives with her family on 20 acres outside La Crescent, was diagnosed in May 2007 with the rare and mysterious complex regional pain syndrome — a chronic pain condition resulting from a dysfunction in the central nervous system.
A chance meeting with April Tillinghast, 15, of Kingwood, Texas, who also has CRPS, sparked a friendship that has helped Sarah handle the pain in her left leg and back.
Sarah's leg began to hurt in April 2007, said mom, Jill Colbert. It got bad enough that Sarah couldn't walk and her leg would turn purple.
Doctors were perplexed. Despite physical therapy and pain medications, Sarah's condition worsened. First she was on crutches, then a walker, then a wheelchair. Finally, she was bed ridden.
"It's so hard to see your child go through something like this," Jill said. "You feel so helpless."
Sarah saw more than 20 doctors, but as time wore on, nothing worked. "Sometimes I wish I could've given the doctors my pain, so they would know what it's like," she said.
In December 2008, a ray of hope entered their lives in the form of kinesiologist Dr. Alan Trites, who has an office in La Crescent.
"He said Sarah was like an onion," Jill said, "peeling back each layer and working through her body's
issues, slowly getting her body back to where it would work with her again."
Then, in June 2008, while at a month-long pain rehabilitation program at Mayo Clinic, Sarah met April. The connection was almost instant.
"She's really a positive personality," April said, "but there's also this really deep understanding of each other."
April's pain was in her right foot, with secondary pain in her head. She had been living with CRPS since 2006.
The girls remained close and continued to communicate via Skype, the online video and phone service, as well as by text messages and e-mails.
"It took that friendship with April to understand and to help Sarah get through all this," said Sarah's stepdad, Tom Colbert.
As the girls became closer, so did Jill and April's mom, Susan Tillinghast.
"I lived in my own shell, taking care of Sarah, finding different things to do," Jill said. "So it was interesting meeting other parents going through the same thing. You have a connection there. It feels so good."
In July, Sarah spent two weeks in Kingwood. April also came to La Crescent for a week.
"It's easier to deal with everything when I'm with her," Sarah said. "If I hadn't met her I don't know where I'd be right now."
Susan, who spoke on the phone from Kingwood, said the girls have formed a healthy bond.
"The greatest thing is the happiness they seem to share," Susan said.
Both girls are grateful for simple things and want a normal life.
"I hope I can do something good with this and help somebody else," April said.
While April would like to volunteer at places like headache clinics, Sarah can see herself becoming a nurse.
"The doctors would breeze in and breeze out, but the nurses were the ones who would take care of you and comfort you," Sarah said.
There isn't a cure for CRPS, Jill said, but she wants people who might be suffering from pain to know there is hope.
"Different things work for different people," Jill said. "Be open to the possibilities."
August 5, 2009