Whitney Leckenby Adapts to Life with FOP

Whitney Leckenby, 30, is a Graphic Designer in Lacey, Washington. Diagnosed with FOP at age 11, she has created ways to adapt in her everyday life by “using things like slings and mouth guards to manipulate and outsmart FOP.”

“FOP has taught me to have faith,” she says. “It’s part of who I am, and I’ve learned so many lessons through this journey.”

Whitney’s FOP was triggered by a car accident at the age of 10, which caused her to experience restricted movement in her neck, back and shoulders.

“I was initially misdiagnosed with fibromatosis, but when my dad did additional research we found Dr. Kaplan, who helped us immensely.”

After joining the IFOPA in 1999, Whitney and her family found it to be a welcoming community of support and useful information.

“The IFOPA is an amazing resource. It’s especially been good for my parents to connect with other families, and for us to get our questions answered.

“Everything has come so far. Our name is out there … I never thought clinical trials would happen in my lifetime, but I’m so happy they did.”

When asked what advice she had for other FOP'ers, Whitney kept it simple.

“Don’t stress your body. Know your limits— and be sure to let doctors and close family and friends know what those are.”