YOU are an important part of your hypophosphatasia (HPP) care team.

For people with HPP (or people who think they may have HPP), finding a suitable doctor is incredibly important. But just as important is the relationship you have with that doctor—more specifically: how active you are in your care.

People who get the most out of their healthcare are those whose relationship with their doctor is a two-way street. Doctors, of course, have thoughts, advice, and recommendations for you. But you too can bring something to the table.

Here are some specific ideas for how you can best be an important part of your healthcare team.

If you have been diagnosed with HPP 

If you have been diagnosed with HPP, do not forget to ask your doctor:

  • What can you tell me about HPP?
  • Are there serious signs and symptoms that I should be aware of?
  • What can we do to manage my current signs and symptoms?
  • Do you have other recommendations for me?
  • What’s on the horizon for people with HPP?

If you think you have HPP, but have not been diagnosed

If you think you have HPP, but have not been diagnosed, do not forget to ask:

  • What can you tell me about HPP?
  • Can you tell me about the symptoms I could experience in my bones, teeth, muscles, joints, lungs, brain, and kidneys? (You can bring your list of your signs and symptoms and the list of common misdiagnoses)
  • Given my signs and symptoms, do you think I could have HPP? If not, why not?
  • Can we take a blood test for alkaline phosphatase (ALP) to see if mine is low?
  • (Once the results are in) Is my ALP low for someone of my age and gender?
If your doctor is not familiar with HPP, you can ask if he or she can recommend a specialist for you to see.

Getting the most out of your medical visits

  • Learn as much as you can about HPP
  • Don’t be shy about sharing information with your doctor. You can bring questions and information to your office visits
  • Keep a record of medicines you take, test results, surgeries, or any implants or rods you may have
  • Tell your doctor about any new symptoms since your last visit, including the type, the date, and where on your body they occurred
  • Bring a list of questions. Remember, HPP is complex—it is OK to have the doctor clarify something if you do not understand
  • Listen closely and take notes. It may also help to bring a family member with you
  • If your doctor is unfamiliar with HPP, ask your doctor to get in touch with specialists in the area who may know more