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The week after the International Hypoparathyroidism Conference is always bittersweet. I’m so thankful I got to spend several days reconnecting with friends, sharing updates on my socials, hearing from hypoparathyroidism researchers and experts, and learning where clinical trials and therapies are in the pipeline. It’s also exhausting and…

“We must find a way to look after one another, as if we were one single tribe!” — King T’Challa (played by Chadwick Boseman) in the 2018 film “Black Panther” My brain fog has been horrible lately. I can recall moments from a random day in 1988, but can’t…

“Oh yes, the past can hurt. But from the way I see it, you can either run from it or learn from it.” — Rafiki in “The Lion King” In October 2018, I prepared to embark on a new chapter in my life with hypoparathyroidism, armed with a journal…

When I was diagnosed with hypoparathyroidism at age 18, knowing where to go to find information or how to connect with other patients was a big problem. My general practitioners often didn’t have the expertise in my disease or time to help, and usually explained my symptoms away as…

“I’m used to being judged. I know what that feels like.” — NASCAR driver Michael Waltrip Hypoparathyroidism is an invisible illness. I appear healthy, but I struggle to exercise and become dizzy from low blood pressure. I easily forget things and sometimes can’t remember what I was saying…

It’s easy to forget that not every medical practitioner understands how hypoparathyroidism affects my life. My rare disease is just a footnote at my biannual or annual appointments; unless it’s actively causing a concerning symptom, I sometimes don’t even mention it. My eye doctor knows hypoparathyroidism, also known as…

“Grief is the price we pay for love.” — Queen Elizabeth II Today marks a year since my dog, Princess Leia, died. A coton de tulear, Leia was a cute, little, white ball of fluff.  She was by my side from the moment I picked her up, Super…

I often wonder how many hours a year I spend in waiting rooms. I’ve been avoiding doing the math, but part of me wants to know. Because of my hypoparathyroidism and multiple comorbidities, I go to two to five medical appointments a week. An average of 3.5 appointments a…

“We’re all in this together/ When we reach/ We can fly/ Know inside/ We can make it/ We’re all in this together.” – “High School Musical” When I was diagnosed with hypoparathyroidism after having surgery for Graves’ disease in 1998, I thought I was the only person with this…

Whenever I get together with my chronic illness friends — especially fellow hypoparathyroidism warriors — we always end up sharing horror stories about the times we needed treatment and couldn’t get it. Some of my favorite advice about advocating for my health comes from the Hypoparathyroidism Association’s 2023…