Scott employee raising awareness of ‘brittle bone disease’ Published May 9, 2012 By Airman 1st Class Joshua Eikren 375th Air Mobility Wing Public Affairs SCOTT AIR FORCE BASE, Ill. -- In light of Osteogenesis Imperfecta Awareness week, the OI Foundation is raising awareness at Scott Saturday with informational displays. OI, sometimes know as "brittle bone disease," is a genetic disorder that makes bones very fragile. Lona Berndt, 375th Force Support Squadron community readiness consultant, has OI, raised two kids who have OI, and works frequently with research studies to help find a cure. Berndt said she spent much of her childhood in hospitals dealing with fractures. "I had my first broken bone when I was three months old and my mom was accused of child abuse over and over again when I was a baby because you don't see too many infants with broken limbs," said Berndt. She said she felt it left a negative impact on her childhood, but it's something she's always had to be mindful of. As she got to the point of deciding to have children, she was told by doctors that there was a good chance for them to have OI as well. "Having walked the walk myself has helped me in providing care for them, but it's still challenging," said Berndt. Her son Ethan, 16, and daughter Jadyn, 11, were both diagnosed at birth, and both are a part of research programs to help find a cure. The research study that Ethan is a part of is a five-year program that involves two-day patient care annually where they do tests such as dietary, urinalyses and physical therapy, to determine how their body absorbs calcium. "I always knew there was potential of getting accused like my mom did, but when it happened it still took me off guard," said Berndt. "I figured if I explained to them about OI they'd understand, but even then people still aren't sure." There are about 50,000 people in the U.S. that have OI according to the OI Foundation. "I think it's awesome that the base is bringing OI awareness. This is the first time I've seen anything on a base that's centered around OI," said Brendt. Berndt and her family have been a part of the OI Foundation and when they have stories about new families she tries to reach out and provide support. "I let them know my family has 40 years of experience with OI and try to lend a supporting hand," said Berndt. The Shriners Hospital for Children in St. Louis has research programs that Berndt's family participates to help find a cure. "I have been a patient at Shriners for 22 years, and it's been helpful having them close by for the first time in our 18 year military career," said Berndt, whose son Ethan has been taking medication that has kept him at a normal bone density range since December 2011. "I hope these studies can continue to keep paving the way for other kids to get out of wheelchairs and walk again," said Berndt. "The education of OI is important to create awareness so that people aren't so quick to judge." According to the OI Foundation it's the only national voluntary health agency dedicated to helping people cope with the problems associated with Osteogenesis Imperfecta. Brenda Reed, 375th Force Support Squadron, said, "Scott will be setting up booths with information to bring awareness about OI and the OI Foundation at the Youth Center, the Exchange, Scott Clinic, and A&FRC." Reed is a family support specialist, who works with Berndt at the Airman and Family Readiness Center. For more information contact the Airman and Family Readiness Center at, 256-8668.