Being that the month of November is upon us (can you believe it?), I want to take a moment to express what I’m thankful for.
I am thankful to live in America.
I know, I know. The topic of “America” is a touchy subject right now, but bear with me. I don’t want to talk about politics. I don’t intend to talk about politics.
I am thankful to live in America, because we have come a long way in terms of healthcare and treatment technology.
Listen, don’t get me wrong, the whole WORLD has come a long way. As for the Universe? I don’t know. The next time I meet an alien, I’ll ask.
Anyway, I was talking to a 20-year-old man living in Europe the other day, and he’s been living with a rare disease called Hypoparathyroidism since birth. Twenty years is a long time—especially with Hypopara. Typically, Hypopara is surgery-induced. Age varies at diagnosis, but on average, it happens in adulthood. So, for this young man to have been diagnosed at birth with Hypopara, that practically makes him an anomaly.
We discussed at length how he’s learned to manage his Hypopara.
This man’s treatment regimen requires him to take one calcium pill at breakfast time and another at dinner, along with a variety of other medications. Anyone living with Hypopara will be able to tell you that’s pretty darn good. Some people report to be taking over 40 calcium pills a day, just to keep themselves from having low-calcium attacks.
Symptoms range from tetany, to brain fog, to fatigue, to mood swings, to tingling, to muscle aches, to complete loss of bodily control. Fortunately, this young man’s symptoms are well under control and he’s able to live his life rather normally.
And then there’s my Italian friend living with Hypopara, who takes over six calcium pills a day to manage her levels, yet still experiences practically every symptom under the sun.
She does her best to maintain her energy throughout the day, but by late afternoon, she’s exhausted.
My friend must spend every morning detailing out her day and measuring how much energy each activity will require before setting out; otherwise, she risks her body shutting down before noon. It all sounded very exhausting as I chatted with her.
I know a handful of people living with Hypopara in the United States. Every single one of them used to take dozens of calcium pills a day to simply function.
Now, however, they’re taking a prescription parathyroid hormone replacement to manage their disease, which has significantly lowered the amount of pills they have to take per day.
That’s awesome! And from what I’ve been told, their quality of life has improved tenfold. As far as I know, this specific medication has not been approved overseas.
Now, I know medications get approved differently and at different times all across the world, but I couldn’t help but think how lucky Americans are to have access to such life-changing medications.
Rare diseases can destroy lives, yes, but the therapies and treatments that are being developed every day, hour, and second can save them.
It’s truly astonishing!
I look forward to the day when the entire planet has equal opportunity to treatment!
