My Demon Has a Name: It’s HPP

Let me introduce myself. I’m an athlete. A wife. A daughter. A friend. A warrior. And I have hypophosphatasia (HPP). I’ve been active my whole life and excelled in sports when I was younger. I thrived when the pressure was on and the stakes were at their highest. I would attack my opponent and surge to a decisive victory, most of the time.

But now, I have a new nemesis. And that demon is called HPP. At first, HPP was winning. I lost so much because the never-ending pain was too much for me. I had to stop playing sports after high school and passed on college scholarships for soccer and volleyball. Things got worse over time and even little things like doing the laundry or the dishes became a challenge. I felt fatigued all the time and suffered physically, then my demon started to control me mentally. I felt defeated.

The worst part was not knowing why I was in so much pain, or even if my condition was real. I had been to so many doctors and specialists that I had lost count. Each time reliving the painful cycle of building hope, then nothing, then despair. I would tell myself to suck it up because it’s all in my head, then around the bend I would go again. I didn’t want to get out of bed at all. Sometimes I wished I would go to sleep at night and never wake up. Things got that bad. And people didn’t understand because I looked fine on the outside but the pain was unbearable on the inside. That was my lowest point. My rock bottom.

Then finally, after many misdiagnoses, a test came back with low ALP. Seeing this myself and desperate for anything concrete, I took the test result to the one doctor I could trust. My pain management doctor thought it might be HPP so he sent me to an endocrinologist, after four rejections from rheumatologists. A few weeks later it was confirmed. My demon had a name. It was Hypophosphatasia. Now I knew why I felt so terrible. I was so happy to hear it wasn’t all in my head that I cried all the way home. I celebrated receiving a diagnosis of a life-long, chronically debilitating disease because it finally had a name. After the diagnosis sank in, I went through the usual stages of grief. Asking why me? Begging for it to be a mistake. Breaking down completely. And finally, acceptance. As you know, acknowledgement and acceptance are half the battle. So, I decided to own every part of my disease and work to make sure others like me wouldn’t suffer like I did.

After I accepted that I had HPP, I was determined to not let my disease control my life. I could finally look my demon in the face, call it by its name, and let HPP know that it would not win. That’s when I decided to take action. So, I did research to find out everything I could.  I spent hours poring over scientific articles, looking through forums, digging through the same information on every website. I was determined to find ways to fight this evil condition. I couldn’t eliminate my demon—it, like pain, would be with me forever.

I began to change how I took care of myself. I made sure I got the exercise I needed but I also set aside time to recover afterward. I’ve always eaten healthy but I found out that I should avoid certain foods high in calcium and vitamin D. The hard part for me is not indulging in ice cream or ordering a pizza when I get home late from work. I found some relief by heating and icing my achy bones and joints and by visiting the cryotherapy center down the street. I joined a gym with a salt water pool to swim and do low impact exercises. I started to use a sauna and get massages a couple times a month. But the best medicine for me is cuddling up with my puppies (furry children) after a long day. Nothing beats the warm non-judgmental body of a dog laying against your sore back.

I’ve come to realize that my fight against HPP is an endurance test. There aren’t any screaming fans, no dramatic finishes, just a lifetime of fighting to keep what I have and what is mine. I’ve never backed away from a challenge in my life and I’m not going to start now. I know this is a different kind of enemy and a battle that may never end but I’m going to continue to fight the good fight. Are you?

Together we can live full lives, love our families (and my furry children), and continue to support each other by building communities and sharing our experiences.

Based on an actual HPP patient story.

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