On Tuesday this past week, we celebrated a “first” – the first meet-up of the Northern California/Bay Area Para Peeps! What a delight it was to meet such wonderful people, each at different stages of their parathyroid journeys. One had her surgery in 2011 after going undiagnosed for 8+ years and had an adenoma removed that was attached to her vocal cord. Another, who had two adenomas removed in 2013, was grateful her surgeon was one that checks all four parathyroid glands. We also met a woman accompanied by her daughter, who was recently diagnosed, and in the process of gathering information to make an informed decision regarding surgery. The last is scheduled for a re-op in a few months after having a failed surgery. There was so much to share and learn and when we heard all these stories, it reinforced why we started PARAthyroid PEEPS in the first place AND why we are so very passionate about our mission …
To inspire patients, doctors and mental health care professionals to become educated about primary hyperparathyroid disease – the symptoms, diagnostic process and the risks associated with the “wait and see” approach and to advocate for the most advanced surgical techniques available to become the standard of care.
There is no question that awareness needs to be raised among medical professional. Of course general practitioners and endocrinologists immediately come to mind, but there are so many other specialists who patients come in contact with because of their symptoms and we want to reach them too. Our audience includes functional medical practitioners, bone experts, mental healthcare professionals, urologists and heart specialists to name just a few! We also want to educate patients that it is more than OK to ask for a copy of your lab results and once you have a copy to check that your blood calcium is in the tight range that is considered normal. Patients need to be aware that the normal ranges for blood calcium do vary slightly by lab and even more importantly, to understand that most laboratories do not adjust calcium values based on age. According to Dr. Norman from the Norman Parathyroid Center,
“Teenagers and people in their early 20’s can have calcium levels up to 10.7 mg/dl. Once you are over 30 however, you should have all calcium levels in the 9’s with the upper limit of normal being 10.0 or 10.1 mg/dl. An adult with calcium levels in the 10’s is very likely to have a parathyroid tumor. Unfortunately, most doctors don’t understand that calcium levels change with age, so they are often confused on this issue.”
Additionally we are thrilled with the response we have received from people wanting to help. We have guest bloggers lined up working on their stories and these will start rolling out next week. This week we also had the pleasure of speaking with Heather Fraser via Skype who we met through the Parathyroid Resource Support and Awareness Group. We had a great discussion as to how we might collaborate on projects in the future.
We also are grateful to the Bone Girls Club for connecting us with people and resources to help spread the word about primary hyperparathyroid disease. You can connect with them on Facebook at https://www.facebook.com/bonegirlsaz. In addition to their FB page, there is a physical Bone Girls (and Guys) Club in Tucson, AZ that meets twice a month for lively discussions on bone health.
We have other exciting meetings scheduled next week too ….one is with a bone expert/author, another is with a woman who runs a speaker’s bureau and there are opportunities for us to learn from endocrinologists as well as surgeons in the coming weeks. We are planning to share all that we learn with you, so please stay tuned! And, if you couldn’t make this month’s meet-up, we hope you will consider joining us for our next one scheduled on Tuesday, April 7th from 11:30 – 1:30 at Pizza Antica in the Strawberry Village Shopping Center in Mill Valley.