With hypopara, curiosity about worsening symptoms is crucial Columnist Heather Novak has learned not to chalk all her symptoms up to hypoparathyroidism. Her recent pain is a reminder of that.

I’ve been complaining about hot flashes overnight for years and more recently, consistent hip pain.

Doctors tried different diets and meds… finally someone said, “check your mattress.”

Absolutely freaking wild.

#hypopara #raredisease

hypoparathyroidismnews.com/columns/hypo...

Hypoparathyroidism news Reframing my hypoparathyroidism diagnosis anniversary This year, I'm acknowledging the anger while focusing on gratitude By Heather Novak Graphics are a nod to Taylor Swift’s song “22”, with red heart sunglasses and red balloon numbers 22

Column banner with two excerpts Column banner: precious, not fragile. Heather Novak. On left, a woman with purple hair is lying on her back, head propped in books, and is reading. A tea cup is next to her. On right a skeleton with purple hair, sitting with knees up, is holding a coffee cup and reading. Center is column title over solid purple bubble. Excerpts: On July 2, my surgical hypoparathyroidism turned 22 years old. It’s wild to think that I’ve had this disease for over half of my life, and that I’ve been sick longer than I’ve been healthy. That one day in 2003 changed everything. When I woke up after the surgery, I knew something was wrong. I had a breathing tube down my throat, sharp static under my skin, and no voice.

22 years ago, I woke up from a “routine surgery” knowing something was wrong. My life changed forever. Here’s my surgically-induced rare disease story

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#hypopara #disabilitypridemonth

Hypoparathyroidism News logo The vicious cycle of hypoparathyroidism and grief. A hypopara body holds together long enough to finish an important project. By Heather Novak Photo of Heather on a couch, center, between her grandma and Mr. Heather. Heather is a white woman in her 40s with glasses and purple hair past her shoulders. She’s wearing flowered skeleton pants and a Romeo +Juliet Broadway shirt that reads The world is not thy friend. Grandma was a 93 year old white woman with short white hair and glasses. She is wearing red and black flannel and a heavy blanket. Mr. Heather is a white man in his 40s with a green shirt and gray shorts. He has short brown hair and blue eyes.

Column header: precious, not fragile. Heather Novak. On left, a woman with purple hair is lying on her back, head propped in books, and is reading. A tea cup is next to her. On right a skeleton with purple hair, sitting with knees up, is holding a coffee cup and reading. Center is column title over solid purple bubble. Excerpt: It’s strange how hypoparathyroidism and grief sometimes intermingle, but also perhaps not at all. Grief affects the entire body, sometimes causing inflammation, fatigue, immune system changes, increased pain, and upset stomach. Hypopara is a rare endocrine disorder caused by low levels of parathyroid hormone that also has far-reaching symptoms, including muscle spasms, fatigue, compromised immune system, and digestive issues — all similar to grief. Combine the two, and it starts a vicious cycle that’s hard to break.

My grandma’s last wish was for me to write her a book that “wouldn’t give her nightmares.” Here’s the story of what happened and the aftermath—

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#Booksky #hypopara #raredisease #romancewriter

Hypoparathyroidism is a rare disorder where the parathyroid glands produce insufficient parathyroid hormone (PTH), resulting in low blood calcium and high phosphorus levels.

June 1 is World #HypoPARA day - www.hypopara.org

You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness

graphic with photo of Heather, 40 year old white woman with purple hair, glasses, and a black mask with pink hearts. Header says Hypoparathyroidism News. Why I still wear a mask as someone with hypopara IT HELPS PROTECT MY IMMUNE SYSTEM AND PREVENT DISEASE COMPLICATIONS BY HEATHER NOVAK.

column header and excerpt. Column header: precious, not fragile. Heather Novak. On left, a woman with purple hair is lying on her back, head propped in books, and is reading. A tea cup is next to her. On right a skeleton with purple hair, sitting with knees up, is holding a coffee cup and reading. Center is column title over solid purple bubble. Excerpt: Why am I still masking? Hypopara, marked by low levels of the parathyroid hormone, affects my calcium and phosphate levels and can make it harder to fight off infections. Calcium plays an important role in signaling the body’s immune response. Parathyroid hormone, calcium, and phosphate imbalances could have a significant impact on the immune system. A cold that would knock out Mr. Heather for a few days can take me down for a month.

column header and excerpt Excerpt: Not only can hypopara lower my ability to fight infection, but the infection itself can cause hypopara complications. Any illness — especially one that includes fever, vomiting, or diarrhea — can make calcium levels unstable. This means when I get sick, l’m at a higher risk for hypocalcemia (low blood calcium). The dangers of hypocalcemia include seizure, cardiovascular issues, and bronchospasm

“Why do you still wear a mask?”

1) I’m at higher risk of infection due to my rare disease

2) Infections put me at a higher risk of disease complications

➡️ hypoparathyroidismnews.com/columns/why-...

#hypopara #disabled #masking

graphic with Heather sitting outside in her rollator. Heather is a white woman with purple hair and glasses. She’s sitting on a walker with a seat and has a cane attached to the front. She has a KN95 mask around her wrist and a purse in her lap containing epi pens. Hypoparathyroidism news banner at top. By Heather Novak Why it’s important to me to write books with disabled characters MY EFFORTS TO NORMALIZE MOBILITY AIDS AND ACCOMMODATIONS

What are your favorite romances with positive disability rep?

“Writing characters with disabilities who get to thrive and be happy, no matter their struggle, is incredibly powerful.”

hypoparathyroidismnews.com/columns/why-...

#romancewriter #disability #hypopara #bionews

All graphics had a teal to pink gradient with textured background. 28 FEB 2025, RARE DISEASE DAY FROM BUTTERFLY TO BATTLE CRY: SWIPE TO LEARN MORE rarediseaseday.org #RareDiseaseDay

With today’s political climate in the U.S., the future of the National Institutes of Health (NIH) is uncertain. A hold on submissions to the federal register means that researchers can’t secure funding

Learn more by reading my column at hypoparathyroidism news. Hypoparathyroidismnews.com. Please read, share, and comment on the column! Together we can lift the voices of the rare disease community

Article snippet. From butterfly to battle cry: How Rare Disease Day has evolved A columnist shares what's at stake for her and others in the community this year by Heather Novak | February 28, 2025 Happy Rare Disease Day! I'm curled up under my blankets, willing my body to recuperate after traveling for a family emergency, and reflecting on how much heavier this day feels to me this year. READ MORE AT HYPOPARATHYROIDISMNEWS.COM

🦋🦓Happy Rare Disease Day! The current state of US politics directly impacts my disease research, which I wrote about in my new column with Hypoparathyroidism News: From butterfly to battle cry

Read my column: hypoparathyroidismnews.com/columns/butt...

#Showyourstripes #hypopara #rarediseaseday

comic of two white women with red hair sharing a secret. One looks shocked. Title of column at top. Hypoparathyroidism NEWS™ A BIONEWS™ BRAND What’s in a name? How I clarify what ‘hypopara’ is — and isn’t Heather Novak: official columnist for Hypoparathyroidism News Woman 1: Wanna hear one of Heather’s embarrassing stories? Woman 2: Immediately. Drop the link!

I mean…who doesn’t want to hear one of my embarrassing stories that my childhood friends still giggle at?

Today’s column is about convincing doctors I have hypoPARAthyroidism, not hypothyroidism

Read: hypoparathyroidismnews.com/columns/what...

#hypopara #raredisease #chronicillness
#bionews

Hypoparathyroidism feels like a heavy weight, but love helps Columnist Heather Novak describes the delicate balance she must achieve to function in life, explaining what hypoparathyroidism feels like.

This Valentine's Day, my column talks about love in multiple forms. My grandma has been moved into hospice, and I'm lucky enough to be with her and the family this week. But my hypopara still has the final say at the end of the day.

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#hypopara #love

Before my hypoparathyroidism diagnosis, I felt it in my bones In her debut column, Heather Novak describes her lengthy hypoparathyroidism diagnosis story, and how she's been living with it since.

I’m thrilled to share my very first column with Hypoparathyroidism News (via BioNews)!

Thank you for this wonderful opportunity to share what life is like living with Hypopara. 🩷

hypoparathyroidismnews.com/columns/befo...

#raredisease #hypopara #booksky #writerslife

Yorvipath for injection medication boxes. White with orange highlights. Popegteriparatide for injection.

After years of clinical trial and advocacy work, and my first commercial shipment for my Hypopara treatment has arrived!

#hypopara #rarediseaselife

I’ve been masking since 2019. My partner and I must continue to mask for the foreseeable future because I’m high risk.

#hypopara #raredisease

Heute ist auch #HypoPara -Awareness-Day.

Bei Betroffenen dieser #RareDisease wird zu wenig Parathormon gebildet, was einen erniedrigten Calciumspiegel zur Folge hat. Die Symptome können z. B. Krämpfe sein, aber auch Panikattacken oder Albträume. (1/2)