My name is Haley Gast and I have been diagnosed and living with HPP for just over 33 years. Prior to being diagnosed at 6 months old, I was very susceptible to RSV, pneumonia, and other respiratory illnesses, which meant I spent a lot of time in the hospital. I experienced delayed milestones and lost most of my baby teeth when they came in.
I also underwent multiple craniotomies to prevent premature fusion of my skull. Later as a child I would start wearing an upper denture at the age of 6, wear leg braces, and undergo a full spinal fusion to correct severe scoliosis. While having known my diagnosis for some time, at around 25 my HPP began to progress.
My symptoms became worse making it hard to work full-time, be a student, and have a social life. I started my journey with Strensiq in June 2019, and life has improved for the better.
When growing up with HPP, my family and I didn’t have the resources nor the support we have today with Soft Bones. I remember attending my first patient education meeting in 2015 in Chicago, where I met many of our HPP community. Currently, I live in Indianapolis and I am always looking to connect with other patients and caregivers.
Soft Bones truly has and continues to make lifelong connections, shares great medically sound studies and articles, and is a home for all those affected by HPP. They have helped me be the best advocate I can be for my family, myself, and future HPP patients.
If you would like to make a donation to Soft Bones in honor of Haley, please click here.