Today we were notified on Facebook that the three of us have been “friends” for one year. We can’t believe how quickly the year has passed and are in great awe of all that has been accomplished. Wow!
One year ago today we had our first meet-up. Stories were shared, symptoms were compared, problems we experienced in trying to get diagnosed were discussed and before we knew it, the three of us were enthusiastically hatching the idea to publicly share our stories to raise awareness of primary hyperparathyroid disease and advocate for improvement in diagnosis as well as standards for surgical treatment.
We now have this website and blog as a forum to share patient stories that has had over 8175 visitors, with 20,900 views from 69 countries. Parathyroid Peeps are active on social media with both a Facebook page and Twitter Account. We have our cute mascot Perry designed by Amy Shimm Noveshen whose mother also suffered from parathyroid disease. We have successfully produced six podcasts with the expert surgeons from the Norman Parathyroid Center and are exceedingly grateful for the time they have dedicated to producing these with us. We are excited that additional podcasts will be forthcoming in the new year!
Given that primary hyperparathyroid disease causes bone deterioration over time, we partnered with the Osteoporosis Community for a couple of projects. We had a two-part interview/article published on-line working with Pam Flores from Health Central and were guests on a live webinar with Dr, Lani Simpson DC, CCD, a certified clinical bone densitometrist and renowned bone health expert and author of No-Nonsense Bone Health Guide.
We’ve met and talked with others who have suffered from parathyroid disease at our 3 Peep meet-ups as well as through phone and Skype session. Of course we have answered many people’s questions via e-mail and messaging. Meeting and talking with so many wonderful souls, has been exceptionally rewarding. We are grateful for the positive relationship that has been established with Sallie Powell who heads up Hyperparathyroid UK Action for Change and look forward to collaborating further to advance our missions.
What’s Next? Bone Girls Club Meet-up & Escape with MORE magazine
In just three short weeks, from November 5-8, we will be in Tucson Arizona for a “girls getaway” to attend Escape with MORE magazine, at Miraval Resort and Spa. During this trip we will have two unique opportunities to share information about primary hyperparathyroid disease. We are pleased to be meeting up with the Bone Girls Club shortly after landing, as it is a priority for us to connect with those who suffer from osteoporosis and those supporting them. It is important for patients to be aware that parathyroid disease can sometimes be the root cause of osteoporosis and we want to make sure those suffering have accurate information to rule out this possibility. We will have a second opportunity to present information at Miraval, and will be doing that with Dr. Deva Boone, one of the surgeons from the Norman Pararthyroid Center. We are super excited for this next great adventure and opportunity to educate, and will post updates, photos and short videos throughout our stay on Parathyroid Peeps Facebook page!
And to those of you still suffering and waiting for a diagnosis or surgery, please know that each day we think of you and send good thoughts your way.
The Parathyroid Peeps