Today we will be interviewing a brilliant young lady, sixteen years old, with idiopathic juvenile osteoporosis (IJO). This story will chronicle Rachel's incredible journey with early-onset osteoporosis with many fragility fractures.
According to the National Institutes of Health, "Idiopathic juvenile osteoporosis (IJO) is a primary condition with no known cause. It is diagnosed after the doctor has excluded other causes of juvenile osteoporosis, including primary diseases or medical therapies known to cause bone loss."
"This rare form of osteoporosis typically occurs just before the onset of puberty in previously health children. The average age at onset is 7 years, with a range of 1 to 13 years. The good news is that most children experience complete recovery of bone (National Institute of Health, 2010)."
Rachel's first fracture of the foot occurred in the 6th grade, with many others to follow. In all, Rachel has sustained nine or more non-traumatic fractures and stress response episodes, and is currently being treated with biannual Reclast® infusions.
Rachel's mom describes her daughter as "an active beautiful young lady who faces the day to day challenges of this condition with a great deal of grit and grace. Her school administration was stunned to understand just recently the extent of her daily pain given how well she performs academically and socially. Although she had to give up ballet, which is her first love, she is active in choir, orchestra and is the incoming president for National Honor Society. Rachel loves to travel and learn about new cultures; her other passion is all things French!"
Rachel's story began with recurrent fractures that were thought to be caused by a high level of activity in Pointe ballet and Lacrosse. Her doctors initially felt that her high-level activities were the cause of recurrent non-traumatic foot fractures; but had to concede after she sustained so many of them, since she is a healthy young lady. She also sustained other fractures of the sacral spine and facet joints, which prompted her withdrawal from her beloved ballet and the Lacrosse team.
Welcome Rachel! We're all looking forward to hearing your story and the impact it must have on your life. We are hoping to raise awareness for this disorder, since not much is known about IJO, and many readers may not have heard of this disorder before. Most people feel that bone loss is an older woman's disorder and we'd like to show that, unfortunately, young people get osteoporosis too. So let's get started.
Rachel, when you were first diagnosed with IJO, did you know anything about early-onset osteoporosis or its causes? What did you do to educate yourself?
Before I was diagnosed with the disease, I thought that osteoporosis was a disease that only affected grandmas. I had no clue that someone as young as myself could develop osteoporosis. Because my family and I knew almost nothing about IJO when I was first diagnosed, we really relied on my IJO doctor, Dr. Lee, to educate us about my situation. We also did a lot of research on the internet to further our knowledge about IJO.
