Tag Archive | rare disease

The Load is Heavy

This post is for my Hypopara friends……

For those of us who have been waiting and waiting and waiting….. and yet again waiting for them to resolve the Natpara issue, this last week was a kick in the gut.

For those of you who have never heard of Natapara, I will give you a very brief unscientific explanation. For those of us who live with Hyopara (Hyparathyroidism), it a nutshell it means our parathyroid glands do not work or work properly. Never heard of a parathyroid? Well that’s because it is one of those things that the body usually never has a problem with. Most (not all) of us came to the Hypopara world due to a problem with thyroid surgery where the parathyroid glands (there are 4) were damaged. At least that’s how I got here. Your parathyroid glands produce a hormone that is responsible for helping your body regulate calcium levels. Not a big deal you think, until you look at this chart.

Anywho……

For a brief moment, all of this was secondary because I got to be on Natpara, a daily injection of the synthetic parathyroid hormone. I was on it for a blip before it got recalled. My body worked the way it was supposed to work without a barrage of pills, self checks and symptoms. I also no longer worried about my kidneys since all levels than were in normal range. Then for reasons that really don’t make sense, this option was taken away. When I say doesn’t make sense it is because it is still available in others parts of the world, just not in the US. So back to daily routine.

Whatever……

As the saying though goes though….. Just because I carry it well does not mean the load is not heavy. It is heavy. Sometimes you get so used to carrying the heavy load that you forget it is there, but it is always there. You stop really speaking about it because you just do what you need to do and even those in your circle don’t see the struggles. Always lurking. Waiting to remind you that it is there. It is those moments that are frustrating. I also know that I am lucky because even with my Hypoparthyrioidism I am able to accomplish and do so much.

But for now, I know that many in the Hypopara community have no choice but to keep carrying our heavy load because we all got notified that Natpara is not coming back. It makes no sense to know that there is something out there that will take away the symptoms, help to protect kidneys because we were no longer taking high doses of calcitrol and calcium, where your face doesn’t start to tingle telling you that your calcium is dropping (that’s what mine does but everyone is different), your feet uncontrollable cramp up, or have muscle spasms in legs. Just sitting here waiting for the other shoe to drop as you deal with the life of hypopara……… because in the end

What choice do we have

especially when the only viable one was taken from us.