So, you or a loved one received a diagnosis of hypophosphatasia (HPP). Getting this news can be shocking, and you may not know what to do next. We’ve put together some tips, advice, and recommendations to help you find the care and support you need on your journey with HPP.
Getting an HPP diagnosis for yourself or a loved one can be devastating, and living with the effects of a lifelong disease can take an emotional toll. You may feel fatigue, stress, and sadness after the diagnosis, and your friends and family may not fully understand what you’re going through. But whether your goal is to learn more about HPP, explore treatment options, or get ready to begin treatment, there is support available for you and your loved ones every step of the way.
It’s essential to be your own advocate, take an active role in treatment decisions, and find the support you need. It’s out there.
Learn as much as you can about HPP and bring a list of questions or some information with you to your doctor visit to help encourage a dialogue. Make sure to communicate openly with your doctor about how you or your loved one is feeling and the symptoms being experienced. It might also be helpful to bring a family member with you, if possible. If your doctor is not familiar with HPP, ask if there’s a specialist in the area who may know more.
And remember, you are not alone. Although HPP is a rare condition, there are people around the world living with HPP, and it can be helpful to find and connect with them. Sometimes talking with someone who understands—chatting online, sharing personal experiences, or just getting a little advice—can make a big difference. Many people with rare diseases join advocacy groups. Others visit online forums or even Facebook groups to find support. By reaching out to others, you can connect with people who understand and can learn about how to live with HPP.
When you have questions about HPP or need support, we’re here to help you. Our articles and patient stories are continuously being updated. If you want to continue your search somewhere else, we can help with that too.