Howdy! My name is Connor, I’m eighteen years old and I live in San Antonio, Texas! I have been officially diagnosed with HPP for almost seventeen years. When I was younger my mom noticed that I was losing teeth really early for a kid my age, so she took me to the dentist, who was the one who diagnosed me. When I was old enough to really understood what having HPP meant for me, probably around 7 or 8 years of age, I was angry and sad that I couldn’t interact with my friends the way I wanted to, but as I grew up I found hobbies that brought me fulfillment and happiness just the same.
I just graduated High School this last summer, and I have plans to leave on a church mission for 2 years in the late winter! Originally from Utah, I moved to Texas when I was 12 and I’ve lived here ever since. I LOVE music. I play the piano and the guitar, and I love to produce my own songs. I also love to be outdoors!! I love hiking, mountain biking, swimming… all of the above if its outside! I also really like to take pictures, especially with old film cameras. I also love to watch and play sports. My favorite sports teams to watch are the Utah Jazz and San Antonio spurs basketball teams, and the Nashville Predators hockey team. In middle school I ran track and pole vaulted for two years and that was a difficult thing to do. This was before StrensiqTM, so I had to medicate with Icy Hot and Tylenol every night after practice. It was so hard because every morning I would wake up and hardly be able to walk for most of the day, and then have to do it all over again. I took a break from sports for the next couple years, where I discovered my passion for photography. One of the things that I credit HPP for is pushing me to find other hobbies that weren’t sports to occupy my time. Reading, drawing, photography, and music production are all things that I don’t think I would have gotten into if I hadn’t had HPP.
When Strensiq came along, it was a complete game changer. Alexion was FANTASTIC, and the drug really turned out to be a miracle in my life. My junior year, our school got a wrestling team and I wanted to be part of it so bad. I was very hesitant because wrestling is a really high-impact sport, but I thought with StrensiqTM, I would be okay. Unfortunately, I got my physical too late to qualify for the team. So I had to wait until my senior year to wrestle. Unlike my track experience, I was able to participate fully in wrestling, and I didn’t feel any pain like I had before. I was still sore because the conditioning was brutal, but it wasn’t the agonizing ache in my bones that I was used to feeling after doing extensive physical activity. It was incredible.
My advice to someone who has been diagnosed with HPP, is to not let it define who you are. Sure, it’s a facet that affects your everyday life, but it isn’t who you are. I know better than most what its like to not be able to do what you feel like you should be able to do. But I also know that it’s easy to get caught up in thinking like that. When I chose to focus on what I could do instead, I found out there was a lot more to what I liked, than just sports or messing around with my friends. My parents were a huge resource when it came to finding other things that I wanted to get into like music, photography, and student leadership. Choose to look for what you can do, instead of focusing on what you can’t.
My hope for the HPP community, ultimately, is a cure. But in the meantime, I hope that everyone involved, from the Volunteers at Soft Bones, to the newly diagnosed families looking for answers; finds a place that they can go for not only resources, but also to connect with friends, and to have a place to go in times of need. I want everyone to feel like there is a place for them, so we can all be one big Soft Bones Family.
I know that all of us who have been live with with HPP have varying degrees of symptoms and functionality, and I know that I am very lucky to have the huge degree of support that I have, even with the more mild of the symptoms that I experience, compared to many. I want everybody to know that they have friends at Soft Bones, and that we are here for you, and to not hesitate to reach out if you are in need.