Cystic Fibrosis and Bone Disease: Who is at risk?

The prevalence of bone disease in people with CF is thought to be close to one in three individuals.

Poor bone health in CF is likely a result of multiple factors, including malabsorption of fat-soluble vitamins, poor nutritional status, lack of physical activity, steroid therapy, delayed puberty, intermittent hormone imbalance mainly due to chronic disease, and chronic lung inflammation. Screening – Your CF Team may perform yearly lab tests screening for bone disease. By the age of 18, every person with CF should get a DEXA (dual-energy X-ray absorptiometry) scan. It’s painless!! The DEXA scan examines bone density. Depending on where you get your scan, they will scan your hip and spine and possibly your wrist. The DEXA scan identifies bone density loss and it can predict the chance of future breaks.

Prevention & Treatment – For those with cystic fibrosis, a nutrient-rich diet and physical activity promotes healthy, strong bones. Part of bone loss prevention and treatment includes taking vitamins and mineral supplements; sometimes medicine is prescribed.

Additionally, weight-bearing exercises can include walking, dancing, low impact aerobics, stair climbing and gardening. These types of exercises work directly on the bones in your legs, hips and lower spine to slow mineral loss.

Be Proactive! Consult with your CF Care Team, Transplant team and/or endocrinologist for early intervention.

As quoted by Mike Shapiro, “As I sat there, a CF male in my 40’s, getting my Reclast infusion to treat my osteoporosis and looking at the medication box, I had to laugh at the image of a smiling gray-haired woman walking the beach. And I thought ‘what am I doing here!?’”

Written by “Salty Porous Bones” – Elyse Elconin Goldberg, Mike Shapiro & Lisa Stackhouse