After nearly 3 decades with hypopara, I’m finally applying for SSDI

“Courage is resistance to fear, mastery of fear — not absence of fear.” — Mark Twain

Imagine waking up each morning not knowing how you will feel that day. Welcome to my life with hypoparathyroidism!

Following my diagnosis, I was lucky to have a husband who took care of me, which allowed me to leave my paid career, focus on my health, and become a mother. Being a mommy is the best job in the world, and I wouldn’t trade it for anything — not even healthy, functional parathyroid glands.

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Blessings

During my divorce amid the pandemic, I took part in Ascendis Pharma’s Phase 2 clinical trial of TransCon PTH, now known as Yorvipath (palopegteriparatide). After my first dose, I felt invincible. I had the same energy that I did when I was taking Natpara (parathyroid hormone) from 2015 to 2017, before its recall.

During this time, I spent my days isolated at the pool, where I met a wonderful neighbor who offered me a position at her new boutique. She understood I had a rare disease, which meant I couldn’t work too much, but she still gave me the job. I loved it. It gave me a purpose.

The best present that Yorvipath gave me was the ability to work! I enjoyed some wonderful years working at the boutique, but unfortunately, I had to resign last November. The U.S. Food and Drug Administration had approved Yorvipath in August 2024, but at a lower dose than I’d been taking in the clinical trial. Reducing my dosage caused my unpredictable hypoparathyroidism symptoms to return.

Now, I don’t know how I’ll feel on any given day. I couldn’t risk leaving my friend short-handed, so I stopped working. Hypopara isn’t fair to my employer or me.

What’s next

I was advised to apply for Social Security Disability Insurance (SSDI). When I stopped working in the 1990s, I didn’t need this resource. But with the state of the economy today, I am having trouble making ends meet.

Luckily, I had enough work credits from my job at the boutique to qualify for SSDI. I started the process by filling out the application and providing numerous medical records from the past year.

Months later, I started receiving letters in the mail about doctor appointments to determine my eligibility. I’d need a mental health exam, lab work, and a physical exam. It seemed strange that a few brief encounters with strangers would determine my future, but I went to those three appointments, grateful that the process was progressing.

I can’t say the mental status exam was a pleasant experience. Because my illness is invisible, people don’t always believe that I’m sick. Trust me, I’d rather work than spend several days a week at doctors’ offices and labs!

At the lab visit, my calcium level was 7.4 mg/dL (the normal range for adults is 8.5 to 10.2). I ended up in the emergency room that afternoon.

On the day of my physical exam, I think I performed well because I actually felt OK during my visit. But that one day of feeling great doesn’t represent the other six days that week that I felt horrible.

No two days are the same

My unpredictable health makes it impossible to look for or hold a job. Employers need to be able to depend on their employees.

It’s been more than 300 days (about 10 months) since I applied for SSDI, and my application is finally in the review phase. Life with hypopara is hard, but surviving with a rare disease in today’s economy feels nearly impossible.

The Social Security Administration usually takes six to eight months to make an initial decision. My medical history is complex, so I hope the government considers my doctors’ notes and records, not just my three brief recent appointments, in determining whether I qualify for disability.

I will keep living, trying, praying, trusting the process, and hoping for a positive outcome. This brave butterfly will never give up the fight. I look forward to the day when I am healthy enough to return to work, but right now, my goal is to get approved for SSDI.

Note: Hypoparathyroidism News is a strictly news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.