Get the support you need.
There is more to living with HPP than managing fractures or other symptoms. Living every day with a lifelong disease can be hard. Symptoms may affect your ability to do daily activities or can make going to work difficult. Friends and family may not fully understand what you are going through. And it is normal to feel fatigue, stress, and sadness before and after diagnosis.
There are advocacy organizations and resources to support people with HPP and their caregivers. Below, you can find other ideas to help create a more balanced life. Sometimes making small adjustments can make a big difference.
Advocate for yourself or your child.
It has been said a million times, and it is true: You are your own best advocate! You know more about your health—or your child’s health—than anyone else. And when you have a rare disease such as HPP, this is especially true! For these reasons, it is very important to take an active role in your healthcare.
Connect with a community.
Whether you have HPP or someone you care for does, some days it may feel like you are alone with your experiences. But you are not. There are many people living with HPP and other rare diseases around the world. It can be good to find them and connect with them.
Many people with rare diseases join advocacy organizations. Others visit online forums or even Facebook groups to find support. By reaching out to others, you can connect with people who understand, trade tips, and learn about how to cope.
Give yourself some space.
Let’s be honest: life can be hectic! And when you are living with a lifelong disease, you already have enough to worry about. So it is important to remember to take time for yourself.
When you have HPP, standing all day or being active can be hard and tiring. The symptoms you are feeling are real, and part of living with HPP is discovering how much your body can do. Once you have found your own boundaries, it is OK to honor them. Whether it is an additional work project, an outing with friends, or even a family commitment—you can say no if you are not feeling up to it. Give yourself some space and do what you need to take care of yourself.