DiagnoseD with hPP oR think you May ... - Hypophosphatasia · HYPOPHOSPHATASIA (HPP)? A combination of physical signs and symptoms—in the bones, teeth, muscles, joints, lungs, brain,

every day with hPP

DiagnoseDwithhPPoRthinkyouMayhaVehPP?Use these helpful tools to discuss HPP with your doctor.

≠HPP symptom tracker

≠How HPP is diagnosed

≠ALP test results form

≠Tips for finding a doctor

Learn more about HPP athyPoPhosPhatasia.coM

tool kit

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

HYPOPHOSPHATASIA (HPP) SYMPTOM TRACKERNoting all of your signs and symptoms in one place will give your doctor a snapshot of your medical history. It may also help him or her better understand how your signs and symptoms are related to HPP.

If you’re an adult and you think you may have HPP, ask your parents or caregivers about any childhood symptoms you may have had—many people with HPP discover that they lost teeth very early, a hallmark sign of HPP.

Learn more about HPP at HYPOPHOSPHATASIA.COM

EVERY DAY WITH HPP TOOL KIT

PART OF THE BODY AFFECTED

SYMPTOMCURRENT SYMPTOM

PAST SYMPTOM

APPROXIMATE AGE AT WHICH PAST

SYMPTOM OCCURRED

BONES

Weak or brittle bones

Rickets due to HPP

Shorter than normal arms and/or legs in proportion to the rest of the body

Legs that curve, or bow, outward

Frequent fractures

Fractures that don’t heal properly or heal slowly

Osteopenia/osteoporosis

Bone pain that won’t go away

Difficulty walking, or the need for a wheelchair, walker, or crutches

TEETHaEarly tooth loss before the age of 5

Tooth loss in which the entire tooth—with the root—painlessly slides out

MUSCLES/JOINTS

Muscle weakness

Muscle or joint pain that won’t go away

Delayed crawling, standing, or walking

Arthritis

RIBS AND LUNGS

An abnormally shaped chest

Underdeveloped lungs

Difficulty breathing, including asthma

The need for breathing assistance

SKULL/BRAIN

An abnormally shaped skull or head (craniosynostosis)

Seizures

KIDNEYSKidney disease

Kidney failure

HPP SYMPTOM TRACKER

INSTRUCTIONSCheck off any current or past signs and symptoms that you or your child have experienced. Be sure to note the age at which they occurred.

aBe sure to look out for signs and symptoms in your teeth. Early tooth loss is one of the first and most obvious symptoms of HPP.

Copyright © 2014, Alexion Pharmaceuticals, Inc. All rights reserved.1014.3.3.0.019

HOW WILL YOUR DOCTOR DIAGNOSE HYPOPHOSPHATASIA(HPP)?A combination of physical signs and symptoms—in the bones, teeth, muscles, joints, lungs, brain, and kidneys—and a simple blood test for low alkaline phosphatase (ALP) can lead to a diagnosis of HPP.



Discuss your test results with your doctor.

If your ALP is low for someone of your age and gender, your doctor may diagnose you with HPP.

HOW YOUR DOCTOR WILL DIAGNOSE HPP

Ask your doctor about measuring your ALP level

with one simple blood test.

Make an appointment with your doctor.1

2

3

For a full list of signs and symptoms of HPP, see the symptom tracker.


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

ALKALINE PHOSPHATASE (ALP) TEST RESULTSBased on your signs and symptoms, if your doctor thinks you could have hypophosphatasia (HPP), she or he can test you for low ALP. After your test, complete this form with your doctor to help you interpret your results.



ALKALINE PHOSPHATASE (ALP) TEST RESULTSBased on your signs and symptoms, if your doctor thinks you could have Hypophosphatsia (HPP), he or she can test for low ALP. After your test, complete this form with your doctor to help you interpret your ALP test results.

ALP—an enzyme that is key for building healthy bones—is low in people with HPP. In healthy people and people with HPP, ALP levels vary throughout life. ALP activity is higher in males than in females during adolescence—so when your test results become available, speak with your doctor to see if your ALP is low for someone of your age and gender.

MY ALP TEST RESULT

Date

Name

Age

Gender

My ALP level (units/L)

Normal ALP range for someone of my age and gender (your doctor will tell you)

For my age and gender, my ALP is: (check your answer)

Low

Within the normal range

High


FINDING A DOCTOR WHO IS FAMILIAR WITH HYPOPHOSPHATASIA (HPP)If you think you have HPP, it’s important to know for sure. If your doctor is not familiar with HPP or how to diagnose it, these tips can help you find a suitable doctor.



FINDING A DOCTOR WHO IS FAMILIAR WITH HPPIf you think you have HPP, it is important to know for sure. If your current doctor isn’t familiar with HPP or how to diagnose it, you can always see other doctors who are familiar with HPP, including specialists. Specialists are very important for people with rare diseases.

TIPS

≠ Ask your doctor for the name of a specialist or doctor who might be familiar with HPP

≠ Contact HPP patient organizations, which may have resources or can suggestspecialists in your area

≠ Get a list of physicians with interest and experience in HPP from Soft Bones: the US Hypophosphatasia Foundation at SoftBones.org

Finding suitable doctors can take time and patience. It’s OK to ask doctors all your important questions until you find “the one.” To manage HPP, a doctor should

≠ Be knowledgeable about HPP or be willing to research HPP and stay up-to-date with new findings

≠ Ask questions about your symptoms and disease history, and really listen to your answers

≠ Ask about your concerns and be open to you bringing in information you think may help

≠ Answer your questions in a way you can understand

≠ Be willing to speak with your family to help them better understand HPP and what you may be experiencing

Once you have found a specialist, ask your current doctor to send your medical records to the new doctor or specialist you’re going to see.


Documents

DiagnoseD with hPP oR think you May ... - Hypophosphatasia · HYPOPHOSPHATASIA (HPP)? A combination of physical signs and symptoms—in the bones, teeth, muscles, joints, lungs, brain,