Patient of the Month- Rebecca
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Sometimes the hardest things in life are actually some of the best because they shape who we are.
Hi! I’m Rebecca, and I have hypophosphatasia. However, as a child, no one would’ve guessed that. Like most kids, I played a couple of sports, begrudgingly practiced piano daily, got into arguments with my younger brother, and loved hanging out with my friends.
I remember my family telling me that I walked differently because I dragged my feet and walked a little hunched over. I’d just get frustrated with them and ignore their coaching to change how I walked. I’ve also dealt with constipation issues all my life, but to me, that was just normal. Thankfully health issues didn’t riddle my childhood years.
But slowly the other issues started to increase. I remember distinctly the first time I experienced dystonia (somewhat similar to a seizure). I got truly good at hiding these episodes since they scared me and the people around me. I also had a whole slew of dental issues emerge; I needed the same dental surgery three times as well as multiple root canals and crowns. And in high school, I developed knee pain, despite not having suffered an injury.
College brought some of the sweetest times but also some of the most painful. I was hospitalized for an ileus, which made me start to pursue answers for constipation and stomach issues. My mental health plummeted, and I sought treatment for that as well. And all the while, I was dealing with a sleep disorder. But I thank God that He gave me caring friends, mentors, and counselors who walked with me through that season; I wouldn’t be where I am today without each one of them.
I decided to leave frigid Wisconsin and move down to Florida to enjoy some sun – one of the best decisions of my life. I pursued treatment in nearly every way I could – both natural and traditional. I saw a lot of improvement, even though additional health issues kept popping up. It felt like there was always something new related to my health.
I was referred to an endocrinologist for a separate issue, but instead, he flagged my low alkaline phosphatase and asked about HPP. I knew my cousin had HPP, but since mine looked so different from hers, I had never even considered it.
I began reading about it and even spoke with my cousin’s parents about their experience. Eventually, we confirmed the diagnosis, and it seemed that all my scattered health issues made sense.
My cousin’s family connected me to Soft Bones and specifically to Sue, Patient Liaison at Soft Bones. She directed me to really good Soft Bones resources. The Facebook page has been invaluable in validating the struggles, better understanding what is going on, and coming up with simple solutions. I also loved joining my first National Patient Meeting last summer – getting to meet so many others with HPP was a real gift.
Sometimes when I hear about others’ stories with HPP, especially those who break their bones regularly, I can belittle my own experience because I only have one non-traumatic bone fracture. The B6-related issues and the stomach/gut issues have been much more difficult for me than a lack of bone mineralization. But the reality is, everyone’s story is different. And every iteration of HPP can be hard in its own way.
I am working on validating my own struggles and learning to listen to and take care of my body regularly. It’s a balancing act to learn to take care of myself while simultaneously not allowing HPP to hold me back. The unknowns ahead can be daunting, and some days are just plain hard. But if there’s anything I want someone with HPP to know, it’s that there is hope. There is more to life than HPP, and there are people who want to walk with you through your struggles.
Today, I work in healthcare, and I love how I can give back to support people through their own health struggles. I’ve started participating in research for HPP, and I’m hopeful that there will be more support for people with HPP down the line. And no matter how things go in the future, I’m thankful for HPP because it has taught me some incredible life lessons, grown me as a person, and connected me to this sweet community I call my HPP family.
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