Do you think you or your child might have HPP?

If your doctor suspects hypophosphatasia (HPP), getting to a diagnosis is simple.1

If you think you or your child could 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.1

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

  1. Track your/your child's current and past symptoms using the HPP symptom tracker.

  2. Print the tracker and bring it to your doctor. Ask your doctor about HPP – based on your/your child's current and past symptoms, does he think you/your child could have HPP? • If yes, ask if you can be tested for low alkaline phosphatase (ALP). Note: this is a simple blood test.

Complicated disease. Simple diagnosis.

HPP can cause many signs and symptoms. One test for low alkaline phosphatase (ALP) can lead to a diagnosis.1

The first step to diagnosing HPP is noticing the visible signs and symptoms of the disease. You can help your doctor get to a diagnosis by sharing all the symptoms you/your child have experienced.1

How your doctor will diagnose HPP

If you or your child are experiencing signs and symptoms of HPP, here are a few steps you can take to help get the right diagnosis.

  1. Make an appointment with your doctor

  2. Ask your doctor about measuring your/your child's ALP activity with one simple blood test1

  3. Discuss the test results with your doctor. If your/your child's ALP is low for someone of your/your child's age and gender, your doctor may make a diagnosis of HPP2

You can download this diagnostic pathway and other helpful tools in the HPP Tool Kit.

The information is intended as educational information for patients and their doctors. It does not replace a doctor’s judgment or clinical diagnosis.

All about HPP

ALP—an enzyme that is key for building healthy bones—is low in people with HPP. Your doctor can identify low ALP with a simple blood test. 1

In healthy people and people with HPP, ALP levels vary throughout life—normal ALP levels are higher in infants, children, and adolescents than they are in adults—so when the test results become available, your doctor should check to see if your/your child’s ALP is low for someone of your/your child’s age and gender. 1,2

Download the ALP test results form and bring it to your doctor on the day of your ALP test.

HPP is often misdiagnosed1,2

People with HPP can experience a number of different symptoms, and many of these symptoms—such as weak or brittle bones or frequent fractures—are also symptoms of other more common diseases.

Below are other diseases that may be more common and share symptoms with HPP.

WEAK BONES

  • Rickets (nutritional rickets and X‑linked hypophosphatemic rickets)2
  • Osteopenia/osteoporosis2
  • Osteogenesis imperfecta2
  • Osteomalacia4

CHRONIC PAIN AND JOINT PROBLEMS

  • Osteoarthritis/arthritis2,5
  • Rheumatoid arthritis5
  • Leukaemia or bone cancer5
  • Fibromyalgia5
  • Pseudogout1

TOOTH LOSS

  • Gum disease2
  • Dentinogenesis imperfecta2

Diseases in bold are the most common misdiagnoses.

GET AN ACCURATE DIAGNOSIS. GET THE BEST CARE.

Getting an accurate diagnosis of HPP from your physician helps to ensure that you/your child receive(s) specialised care. It also helps prevent your doctor from giving you/your child medications that do not help your/your child’s condition—and could actually be harmful to someone with HPP.1,2

ONCE I’M DIAGNOSED, WHAT CAN I DO?

If you have been diagnosed with HPP, work with your doctor to understand the symptoms that you are experiencing and to help manage the activities of daily life that might be more difficult for you. Discuss what medical help they can offer.

What types of medications could be harmful for someone with HPP?

People with HPP should avoid

  • Calcium supplements
  • Vitamin D supplements
  • Phosphate supplements (such as bisphosphonates)

These medications—which may be given to someone who is misdiagnosed with other similar disorders—can make some symptoms of HPP worse.1,2

People with HPP cannot properly process minerals such as calcium, vitamin D, and phosphate. Adding additional minerals can lead to growth failure, bone lesions, and calcium deposits in the kidneys. Once a patient stops taking the medications, their health may improve.3