Meet Judith H.

Relationship to HPP: Region Lead for Northeast. I have been diagnosed with juvenile-onset HPP.

Joined: May 2019. It’ll be five years in May; how time flies!

What do you want the world to know about HPP? That HPP is an inherited systemic disease that impacts each patient uniquely, even among family members who share the same genetic variant(s). This can make diagnosis very difficult for many patients as their symptoms can be attributed to other conditions and doctors historically have not been trained to investigate consistently low/low normal alkaline phosphatase levels, one of the hallmarks of HPP.

What motivated you to be a part of this community? For most of my working life, I was involved in the clinical research community and working with patient advocacy groups like Soft Bones became more and more important in developing new medicines. Now I’m on the other side of the fence and am very grateful for the work Soft Bones does for our community!

What is your favorite quote? “Do unto others as you would have them do to you”.

I try to adhere to this as much as humanly possible.

What is one fun fact about yourself? During a gap year between high school and college, a friend and I hitch-hiked around Europe wearing pink hats and sneakers; we looked really silly but we had lots of adventures and fun!