When told by a doctor that she had osteoporosis, Carolyn Grove knew what she had to do: Learn as much as she could about the condition so she could inform and help others.
And, when possible, help herself.
"Being passionate about health and wellness has benefited me by making me more aware of things to do to prevent and manage chronic diseases, and having a background in writing and editing scientific material also helps," Carolyn said. "Being diagnosed with osteoporosis automatically put me in research mode - wanting to find out as much about management and treatment."
In addition to learning more about how to live with, treat, and manage osteoporosis, Carolyn was surprised to learn that many people affected with the condition are often uninformed about its symptoms and effects. Especially troubling was her sense that more money is spent on advertising and marketing osteoporosis-related products rather than on advocacy efforts.
When she was diagnosed, Carolyn said her doctor shared the results of a test known as DEXA (Dual-emission X-ray absorptiometry) that measures bone mineral density. He also gave her a sample of medication to help treat and prevent bone loss. Otherwise, she was on her own.
"This condition affects about 10 million Americans, and another 34 million are at high risk," Carolyn said. "I decided to become an advocate as soon as I was diagnosed and realized how little information I had been given, and I knew I had to research as much as possible to learn about the condition."
Carolyn uses what she calls the TEaM approach in working with fellow osteoporosis patients. She defines that as "T" for talking with health care providers; "E" for knowing what to eat and not eat; and "M" for understanding the benefits of movement and mobility.
"Sharing information is what I do, so sharing what I've learned about osteoporosis was inevitable," Carolyn said. "It's a good feeling being able to tell others that their condition is on the forefront of research dedicated to better treatment and preventions leading to increased quality of life. "
Nominated by the National Osteoporosis Foundation to serve as a Consumer Reviewer for the Department of Defense Peer Reviewed Medical Research Program, Carolyn explained that learning about research for potential new treatments is another way for her to familiarize herself with osteoporosis, which in turn will make her an even better advocate.
"After my first experience on the peer review panel, I returned home with positive feelings knowing that I had a part and a voice equal to experts in the field in helping to determine the direction of research for osteoporosis and other bone related conditions," Carolyn said. "The camaraderie and team approach was exceptional. Everyone, from administrators to chairs of the panels to medical reviewers, was valuable to me, and they all took the time to explain the process and make me feel that my opinion mattered and was valued by all involved."