Meet Sue Krug

Relationship to HPP: I am a patient with HPP. I have two mutations, one from each of my parents. Since the moment I was born and probably in the womb, I have had HPP symptoms.

Joined: I have been involved with Soft Bones since 2011 or 2012. I was on the Yahoo HPP message board, where I met Deb. On one of her visits to Phoenix, Deb asked me to join the Patient Advisory Board (PAB) over lunch. I slowly took on other jobs for her and officially became the Social Media Patient Liaison. I am an admin who communicates with our HPP community and moderates our Soft Bones U.S Facebook page and other international groups. I talk to most of our international HPP members and help them understand what hypophosphatasia is through Google translate. I am also one of the Southwest Region Leads and help with events in five states. 

What do you want the world to know about HPP? Most rare diseases take many years to diagnose and have no cure, which makes living with a rare disease challenging and unique in many ways. Hypophosphatasia is no different. The broad spectrum of symptoms and severity makes having hypophosphatasia a challenge.  Hypophosphatasia is sometimes one step forward and two steps back but that is no excuse to not to achieve your dreams. Sometimes, you have to do it your way to get there. Even if you have been diagnosed with HPP never let it define you. You have HPP, but you are more that that.

What motivated you to be a part of this community? I was misdiagnosed and was part of another rare disease community for 55 yrs and knew how important that was. I wanted to help this community grow and share their stories so that HPP wasn’t an unknown medical word, and to let those with HPP not feel alone.

What is your favorite quote? One of my favorite quotes comes from grade school, “Put your rear in gear, you get no sympathy here”. The second comes from the Marine Corps, “Improvise, adapt, overcome”. I say this everyday.

What is one fun fact about yourself? I used to be FCC (Federal Communications Commission) licensed and operated a HAM radio. I was a relay operator during tornado outbreaks and international disasters. I belonged to The American Radio Relay League (ARRL), which is the national association for amateur radio. My brother and I were also visual storm spotters within Northern IL. I did this from when I was 13 to 26 years old. I had to give it up because of work, but kept my license until I was 42 yrs old.