Hypophosphatasia (HPP) Stories
Every HPP story is different.
Every voice matters.
Every voice matters.
Life with HPP, in their own words
Every person’s experience with HPP is different. Symptoms can look different from one
person to the next and may affect different systems in the body.
Watch real stories from people living with HPP and caregivers supporting loved ones,
from first symptoms to finding answers and navigating life.
person to the next and may affect different systems in the body.
Watch real stories from people living with HPP and caregivers supporting loved ones,
from first symptoms to finding answers and navigating life.
Start with the highlights:
No two HPP stories are the same
Some people first notice bone symptoms. Others experience fatigue, muscle pain,
brain fog, or changes that are harder to explain. For many, something simply doesn’t feel right.
These full stories offer a deeper look at how HPP can affect different people in different ways, at any age.
brain fog, or changes that are harder to explain. For many, something simply doesn’t feel right.
These full stories offer a deeper look at how HPP can affect different people in different ways, at any age.
Hear more HPP stories
Life With HPP
Meet Brian, who was diagnosed in infancy, and learn more about his experience living with HPP.
For many families, learning about HPP brings clarity to experiences that once felt confusing or unexplained.
They explained to me that there is a 50% chance that any baby I was to have may have HPP as well. It was a big shock to me that it was a family genetic thing.- Liesl, Living With HPP
There are steps you can take
Listening to your body. Reflecting on symptoms. Preparing for conversations with a doctor.
Connecting with others who understand.
Taking these steps can help bring more clarity and support along the way.
If you’re ready to take the first step, you can start here.
Connecting with others who understand.
Taking these steps can help bring more clarity and support along the way.
If you’re ready to take the first step, you can start here.
You can start checking your HPP symptoms
Here's a quick, interactive way to reflect on symptoms and support conversations with a doctor.
Take a look at upcoming virtual events that bring people together to learn and share.
Discover helpful tools, downloadable resources, advocacy groups, and other ways to stay informed and supported.
Stay connected with updates and information about HPP, no matter where you or your loved one is on the journey.
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