Meet Blynda Kellner

Relationship to HPP: I was diagnosed with HPP around 6 months old.

Joined: I found Soft Bones, I think in 2015. I’m actually not even sure. This community has been a part of my life. They are family to me now. I was in the Yahoo group before that for some time. Sue Krug reached out to me & invited me to a HPP National Patient Meeting. I am so thankful to her. I am so in awe of & thankful for Deb & all of those who have worked behind the scenes to make life better for those of us living with HPP.

What do you want the world to know about HPP? HPP is a bone disease that is so often mis-diagnosed as other diseases, because it is so rare. It affects everyone differently with some dying in the womb to those who don’t recognize any symptoms until they are older. It affects teeth, bones, muscles, mental well being & so much more.

What motivated you to be a part of this community? First I just wanted to learn & hear from others living with HPP. I had up to that time lived my life alone in regard to this disease. No one knew anything about it, & I felt like an oddity that no one understood. Now, I’m still learning, & as a Region Lead for the Southeast, I have the opportunity to help Soft Bones with their mission in spreading awareness & helping others who have HPP. Soft Bones helps fund research to find a cure, & who doesn’t want to be a part of that?

What is your favorite quote? “Do unto others as you would have them do unto you”. I made sure to teach my children this & now my grandson. You never mistreat anyone.

What is one fun fact about yourself? I have illustrated a few children’s books. I love art, & would love to spend more time with it. I also fell asleep once at a Metallica concert. In my defense, I was pregnant. Ha ha.