We are thrilled to report the great strides we’ve made in 2016, only two short years since the 3 of us met and started our journey together as the Parathyroid Peeps.
This past year the number of visitors to our website totaled 16,436, a 43% increase over 2015. These visitors included people from 100 countries! We hope that we have helped ease your burden in some way by sharing our stories and content.
We hosted a total of six meet-ups, five of which were held in the San Francisco Bay area and one in Tampa, Florida . The three of us returned to the Norman Parathyroid Center where we had our surgeries -Barbara in 2011, Joyce in 2013 and Sophie in 2014 – but this time as advocates instead of patients,where we met with their team of surgeons and learned as much as we could from the experts to help us strategize how to advance our mission of raising awareness and advocating for the most advanced surgical techniques to become the standard of care for all patients.
We posted 26 blog posts with the help of some fantastic guest bloggers including Brittany Kenyon – March 17th and Lora Parks – April 5th. These incredible women bravely shared their stories with all of you in hopes of making your journey a little easier perhaps.
If you didn’t catch our podcasts with parathyroid troopers Barbara Johnson on February 18 and Janet Filippi August 23, we invite you to listen to them when you have a moment. Listening to these two delightful, articulate women tell their stories is powerful.
We also hosted and produced two podcasts with Dr. Douglas Politz. you can learn more about this expert surgeon here. The topic covered were Rare Causes of Hyperparathyroidism and Hypercalcium and a Q&A with questions submitted from our followers. Check out all eight podcasts produced to date to have many of your questions answered.
Another huge accomplishment was our coordinating and hosting an expanded 2nd Annual Parathyroid Peeps retreat at the Miraval Resort and Spa in Tucson, Arizona. This was a huge endeavor! We couldn’t have achieved this goal without the expertise of and the amazing support from our fabulous speakers, Dr. Deva Boone from the Norman Parathyroid Center, Sandi Putnam fellow advocate and Founder of the Tucson Bone Girls Club, Lynn Perkins CEO and Founder of UrbanSitter and Psychologist and Consultant Dr. Jean McPhee
We’d love to give a shout out to all the special people who we have connected with but that simply isn’t t possible here. We are grateful to those who helped by submitting data in relation to how labs report calcium values, donated raffle prizes to the retreat event, faithfully attended meet ups, sent us books to review and have offered to be speakers at future events.
In the end it all comes down to making a difference in the lives of people suffering from primary hyperparathyroid disease. E-mails like this one written by Joanne keep us moving forward in this journey with all of you….
Ladies! You saved my life! Especially Joyce’s story! I have been reading her story for about a year now and finally self referred myself to Tampa! I was in the gray area, kind of like Joyce, but proceeded on with 90% rating. Today, Jan 13th, I had two tumors removed! I need to share my story and spread the word!
Together we can continue to work to create change so that….
- Primary hyperparathyroid disease is clearly understood by the medical and mental health communities and is considered as a possible root cause when physical and/or mental symptoms associated with the disease are present.
- Medical professionals are familiar with the various biochemical presentations and associated symptoms.
- Appropriate blood tests are ordered and values are properly evaluated to determine if calcium is high and outside of the tight range that is considered normal and/or parathyroid hormone levels are elevated.
- Normal range for calcium values are consistent from lab to lab and take into consideration a patients age, with 10.1 being the high end of normal for adults age 30+
- The asymptomatic label is lifted and the wide range of symptoms patients do experience will be recognized as being related to pHPT.
- Medical professional are educated and clearly understand that those patients labeled as asymptomatic, as well as symptomatic patients, benefit from surgery.
- The medical community is aware of the most advanced surgical techniques available to perform parathyroidectomies and surgeons are highly trained to execute the appropriate technique(s).
To learn more read our ACTION PLAN
Looking forward to another productive year in 2017!
Congratulations on a job well done ladies! I hope that you will give a more in debt list of symptom of Primary Hyperparathyroidism. I hope you would describe Parathyroid storm or Parathyroid crisis. I am looking forward to reading more post and listening to your Podcasts.
A great deal of work, and well done. Keep it up for 2017!