Living with HPP: Larry M.

My HPP journey started after attending a conference in Phoenix, Arizona in 2017. I brought my son, Zane, who was diagnosed with HPP 19 years ago. While being educated at this conference, I was asked from staff what my history was. I quickly explained that I was just a caretaker. They said, “but we want to know your history”. After I explained my heath history, I was asked why I had never been tested for HPP. My response was “because I had a son to worry about and take care of” and that “it never crossed my mind”. When we got home from the conference, I immediately made an appointment with my family doctor. This doctor is the wife of the doctor who diagnosed my son all of those years ago. She tested my alkaline phosphatase (ALP) levels and B6 levels. My ALP was super low and my B6 was very high. She referred me to the endocrinologist who my son and I see now. He did further testing and at the age of 44, I was diagnosed with HPP. By July of 2017 I was prescribed Strensiq™.

My life long hobby was weight lifting. When my son was born I owned a gym and was an avid lifter. Shortly after my son was born, my body started falling apart. I had broken my neck twice lifting weights, I had a rib removed due to poor circulation from irregular skeletal structure, and in an accident in 2014 I broke my tib/fib trying to escape out of a fire in which I burned 35 % of my body. I spent 25 days in the burn unit getting skin grafts. It was 15 years without what I had a passion for, weightlifting. Two months after I started StrensiqTM, my wife asked me if I wanted to try lifting again. She was a competitive bodybuilder. I told her I was too scared to break again. She said “let’s try”.

In September of 2018, after a year of training, I finally competed in my first bodybuilding show. It was a dream come true. I won the overall in my category. My son got to see me win. That was what I was trying to show him. HPP does not own us. It is always there, but not in full control.

My advice for anybody who gets diagnosed with HPP, is to not give up, keep the faith, and keep living. My son is now in the gym with me with aspirations of competing one day. My hope for my HPP family is to concentrate on the little wins, the good days, and leave the bad ones behind. Remember, our lifeguard walks on water!

After my first show I made a positive post on Soft Bones Facebook page and I was contacted by a bodybuilding coach from Canada that also has HPP. After talking to Rob J. from Team Jax Physiques, we decided that he was my new coach, and we were competing again to try to make it to Nationals. Rob J. has been able to use his knowledge of our limitations to cater training to avoid injuries from HPP. This is going to be a great year. I keep training and competing for all of my HPP family to prove that life isn’t over with a diagnosis.


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