Community is a powerful force for change — and all the better if the community is one that learns and shares together.
I recently became a fan of one such group — The Bone Girls Club of Tucson, Arizona — and wanted to tell others about their inspiring story.
While it began as a group of women exercising together who found they all had an interest in bone health, the Bone Girls Club has blossomed into a self-education community with a Facebook presence with international followers.
After I noticed this club was sharing my Facebook posts, I gave them a call to learn more.
What started out as a “let’s learn and share” group has turned out be a significant force for bone health advocacy.
Meeting twice a month, they discuss research articles on osteoporosis and bone health, and share tips, recipes, and their own success stories. Occasionally there’s an invited speaker, but mostly they read research/educational articles and share their insights. I’m impressed that they aren’t shy about tackling the more obscure causes of bone loss. In fact, they are currently researching how an overactive parathyroid causes bone loss and what to do about it.
To me the Bone Girls Club is a model of self-empowerment. One woman — one dynamic woman named Sandi — got the ball rolling after a horrendous experience with bone drug–induced fracture. (Nine years on Fosamax for osteopenia led to the development of osteoporosis and two insufficiency fractures of the sacrum and another of the pelvis.)
This painful experience propelled Sandi into taking charge of her bone health. She began learning and sharing with others all she could about osteoporosis, bone drugs, the causes of bone loss, and bone health recovery.
No one cares about your bone health as much as you do, so consider taking charge. Read, learn, explore, and share what you learn! A simple way to begin right now is to forward this blog to a friend to start the conversation about natural bone building. You might also begin by picking another article or blog here or from the Bone Girls Facebook page and discuss it with a friend or two. Who knows what will happen!
You can celebrate May as National Osteoporosis Awareness & Prevention Month with the May Better Bones Challenge. Each day, we give you a option to build your bone health by eating well, moving, learning or restoring. Look for the icons at the bottom of the calendar for an explanation of what each icon means.
Creating community is a powerful and fun way to learn, educate, and build bone!
The Bone Girls Club in Tucson is now 6+ years old. There are three meetings each month that cover morning, afternoon and evening times. There is a 4th meeting in the wind which will be a lunch on the far side of town for those who live in that area on any 5th Thursday during the year. These are drop in open conversations that address whoever appears to need the information at the time. If not, there is always an informal agenda that compromises current topics of interest.
As Sandi, the leader of this group, was completing a successful course of Forteo for Fosamax fractures, it became clear that elevated serum calcium was, after all, NOT solely due to the drug, but 15 years of unnoted elevated serum calcium levels. This went unchecked because the reference ranges worldwide are incorrect in that they do not address age range which means the whole population is included; so that young people with naturally higher values of calcium are in the mix and because they continue to make new bone, this skews the results and misses MANY people with parathyroid disease.
With careful study of the parathyroid.com site, it became clear that this was an issue. Sandi self-referred to Norman Parathyroid Center for a consult and subsequent surgery in April 2016 at NPC some 2,000 miles from home. The reason being that they are the best and that their success rates are the highest for first time surgeries, as well as those who come to them who were not cured by their first and even second procedures. Those are commonly more difficult cases if the first surgeon created a good deal of scarring by spending too much time on what turned out to be an exploratory surgery instead and did not locate and check all four glands. At NPC, their surgical protocol is unique and produces the most lasting outcomes.
In the next year and a half, 5 more Bone Girls also went to Tampa for parathyroid surgery with the same fantastic outcomes. There’s a once a month lunch of the para-troopers Also invited are 8 others who had their surgeries locally or in state. No more talk about health issues, only randomly if at all.
There is a well-respected National Osteoporosis Foundation forum called Inspire that has a new community called the Parathyroid Peeps that has its own focus solely on primary hyperparathyroid disease where members can turn for more expert and focused replies from these women, who post-surgical patients of Norman Parathyroid and about 6 years old with their mission to bring awareness to this insidious disease, so poorly diagnosed and recommended for surgery. Sandi is a volunteer moderator and Dr Deva Boone, the community medical advisor who is the medical director of Norman Parathyroid Center. This volunteer component also includes Dr. Courtney Balentine endocrine surgeon at North Texas VA Hospital.
As a group, the Bone Girls and one Guy are learning the value of and asking for bone markers to accompany DXA reports for a more well-rounded evaluation of what is happening at that time. Several have had successful tracking of theirs that in one case shows improvement on a hormone therapy approach for now and buying her time until she may need to consider the use of a bone drug, and another individual’s tracking of CTx shows there is not much change in this bone loss marker, mid-range, for the past four years.
We continue learning and growing our knowledge base so that we can have meaningful conversations with our doctors and express our concerns and ask for viable options to our treatment plans, that if they include drug therapy, we are monitored with bone markers and other blood work and not just cut loose indefinitely on any bone drug. We do favor the more natural approach, but have not completely ruled out the use of bone drugs when appropriate and when carefully monitored, including bone drug holidays.