Getting to the right diagnosis can be difficult, but diagnosing hypophosphatasia (HPP) is simple.

If you have—or think you have—HPP, knowing for sure is important. But figuring it out is not always easy. HPP is rare. It can look like other more common diseases. It can affect many different organs, and can affect different people in different ways. Currently, because of these factors, it can take many doctors, many visits, and sometimes many years to figure out what is wrong.

If you think you have HPP, what can you do to help your doctors find the correct diagnosis? 

  1. Track your current and past symptoms using the HPP symptom tracker
  2. Print your tracker and bring it to your doctor. Ask your doctor about HPP—based on your current and past symptoms, does he think you could have HPP?
  • If no, why not?
  • If yes, ask if you can be tested for low alkaline phosphatase (ALP). (Note: this is a simple blood test)

If you believe you have been given the incorrect diagnosis, do not hesitate to find a specialist who is familiar with HPP. 

If you are having symptoms, but your doctor has not been able to diagnose you—or the diagnosis you have does not seem to fit—you may be frustrated or scared. You can always see another doctor or find a specialist who may be more familiar with HPP. Specialists are very important, especially when it comes to rare diseases. Seeing another doctor or finding a specialist can give you the confidence that you have gotten the right diagnosis. Use the tips from our Tool Kit to find a doctor who is familiar with HPP.