Reflecting Back and Looking Forward

This July 17th marks the one year anniversary of my parathyroid surgery.  (Coincidentally the month of July also marks Barbara’s anniversary of 4 years!) While this year has literally flown by, I can’t help but reflect on the major milestones I was able to accomplish thanks to my renewed health.

A year ago I still remember flying across the country to the Norman Parathyroid Center in Tampa, Florida and checking in at 5 am for my surgery. I was scared this disease was all in my head, as I had self-diagnosed and referred myself for surgery.  I was also scared that the surgeons might not find my tumor. Upon waking up from my 17 minutes surgery I was already feeling the changes in my body and the pain in my bones was already gone. I had won the battle with primary hyperparathyroid disease! Once I arrived back at home in San Francisco and realized how easy it should have been for my doctor to diagnose me I felt angry and let down. Primary Hyperparathyroidism is not a rare disease, so why is it not a condition that doctors learned much about in medical school? Why are endocrinologists so quick at prescribing medication instead of referring patients for surgery, when surgery is the only cure?

Last September I joined a FB support group for people with this disease. At last I was able to communicate with former patients but still felt that what I really wanted was to meet face to face with others who had also suffered from this disease and with whom I could relate. This FB search led me to Barbara and Joyce who live in the San Francisco Bay Area. After exchanging a few IM’s, the three of us decided it was time to meet in person. And so, last October, we met in Marin and an instant connection started. We couldn’t stop discussing our struggles for a diagnosis and cure and decided that we needed to join forces to do our part to educate others about primary hyperparathyroidism. Within a few days we were calling ourselves the Parathyroid Peeps.  We continued to meet on a regular basis and within a few short months we created a website and Facebook page. We wondered….. Could we make a difference? Would people read our blog posts? Could we work with the surgeons at the Norman Parathyroid Center to support the medical piece of our message?

During this month of July I am bursting with joy and celebrating the raising of awareness.  We are being contacted by people across the country who thank us for sharing our stories. Others have commented how helpful the podcasts have been, as they provide those who are seeking a diagnosis or those who have been diagnosed with this disease the information they need to make informed decisions.  We cannot thank our readers enough for reaching out to us to let us know that we are making a difference! Nothing makes us happier than to hear that people were able to get a successful surgery and they are now on their way to renewed health. We are equally excited for what lies ahead as we are still full of ideas and enthusiasm for continuing this journey with all of you joining us.

Sophie

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