Living with HPP
The practical side of HPP: managing pain and fatigue, looking after teeth, moving safely, getting the right support at school and work, and navigating the Australian systems that can help.
Pain, weakness and fatigue
For many adults with HPP, pain is the condition. It tends to be deep, in the bones and muscles rather than the joints, and it does not always match what shows up on a scan. Alongside it sits muscle weakness, often around the hips and shoulders, and a fatigue that is out of proportion to activity.
None of that is imagined, and none of it is a failure of effort. It is a direct consequence of a skeleton that is not mineralising properly and muscles working harder than they should have to.
What tends to help
- Anti-inflammatories are usually the first line, at the lowest effective dose and with your GP's oversight
- Pacing, spreading effort across a day or week rather than pushing through and paying for it
- Heat, rest and positioning for flare periods
- A pain management service referral where pain is persistent; most major hospitals have one
- Naming the pattern to your GP so it is recorded, not re-litigated at every visit
On opioids
Strong opioids appear to be of limited use in HPP pain and carry significant downsides over the long term. That does not mean living with untreated pain. It means a pain plan that does not rest on them alone.
The invisible-illness problem
Adults with HPP often look well. Fatigue, bone pain and weakness are not visible, and many people spend years being told there is nothing wrong before anyone finds the diagnosis.
A few things that make the difference:
- Ask for a copy of your diagnosis letter and keep it with you
- Write down the pattern before appointments: what, where, how often, and what it stops you doing
- Bring someone with you to important appointments
- If you are not being heard, it is reasonable to ask for a second opinion
Living with a long diagnostic delay takes a real toll. If it is weighing on you, that is worth raising with your GP too. It is part of the condition, not separate from it.
Dental care with HPP
Teeth are anchored into the jaw by a mineralised layer called cementum. In HPP that layer is thin or missing, so teeth loosen and come away with the root intact, usually without pain, infection or gum disease.
In children, the front bottom baby teeth typically go first, often before age five. It is one of the earliest and most recognisable signs of HPP, and one of the most frequently missed. In adults, permanent teeth can loosen the same way.
This is not a hygiene problem. Families are sometimes made to feel it is. Standard gum-disease treatment is not the answer, because the cause is structural.
Practical steps
- Tell your dentist the diagnosis explicitly, because most will not have seen HPP before
- Keep teeth in place wherever it is possible to do so
- Regular reviews, so changes are caught early
- For children, ask about referral to a paediatric dentist; public paediatric dental services exist in every state
- If teeth are lost, ask about replacement, because this affects speech and eating, not just appearance
- Keep any teeth that come out; a specialist may want to examine them
Getting dental care in Australia
Public dental services
Every state and territory runs public dental care, generally for concession-card holders and children. Waiting lists are long, so ask whether a diagnosis of HPP makes someone a priority case.
Child Dental Benefits Schedule
A Medicare scheme that covers basic dental for eligible children. Ask your GP or Services Australia whether your child qualifies.
Hospital dental departments
Major public hospitals and children's hospitals have dental departments that handle complex cases, usually on specialist referral.
Private cover
Dental is largely outside Medicare for adults. If you hold private cover, check annual limits early, because HPP dental needs can be substantial.
Exercise, physiotherapy and staying active
Movement is recommended for people with HPP at every age. The question is not whether to be active, but how.
There is a persistent myth that people with HPP should avoid exercise. Current clinical guidance says the opposite: physical activity benefits people with HPP regardless of age or severity, and being sedentary carries its own costs: more weakness, more stiffness, more pain.
What guidance does advise is that activity be supervised, varied, mild-to-moderate in intensity, and matched to what each person tolerates. Long, monotonous or heavily isometric work and outright overexertion are specifically discouraged.
Because stress fractures and pseudofractures are common in adult HPP, a program should be built by a physiotherapist who knows the diagnosis, not lifted from a general osteoporosis or strength template.
What to tell a physio who hasn't met HPP before
That bone in HPP is under-mineralised and heals slowly; that stress fractures can occur at loads a typical skeleton would handle; and that the program needs to build gradually with genuine review points rather than a fixed progression.
Building a program that works
- Get a referral, ideally to a physio with musculoskeletal or paediatric experience
- Start below what you think you can do and build from there
- Vary it, using several muscle groups rather than the same repetitive load
- Watch for new focal pain, especially in the feet, and get it checked rather than pushing on
- Consider water-based activity, which reduces load while allowing movement
- Ask about custom orthotics if feet, knees or gait are affected
- Review regularly as tolerance changes over time
An occupational therapist can also help with the other half of the picture: how to set up home, school or work so that everyday tasks cost less.
School and childcare
Australian schools have obligations under the Disability Standards for Education to make reasonable adjustments for students with a disability, and HPP qualifies where it affects a child's participation.
You do not need a fight to get this. You need a meeting, a written summary of what your child needs, and a named person at the school who owns it.
Adjustments worth asking for
- Modified or alternative PE, aiming for participation rather than exemption wherever possible
- A rest option, and permission to sit out without negotiating it each time
- Extra time between classes; a second set of books to avoid carrying a heavy bag
- Lift access, or a ground-floor classroom
- Realistic absence arrangements for appointments and recovery
- A plan for what staff do if the child has a fall or suspected fracture
- Adjustments for exams and assessment where fatigue or pain affect performance
Ask whether your child should be counted under the Nationally Consistent Collection of Data on School Students with Disability, which schools use to plan and resource support.
What to put in a letter to the school
- What HPP is, in two sentences, without jargon.
- How it affects your child specifically: pain, fatigue, fracture risk, dental appointments, mobility.
- What it is not: not contagious, not behavioural, not a reason to lower academic expectations.
- The adjustments you are asking for, as a short numbered list.
- What to do in an emergency, including who to call and what to say about slow-healing bones.
- Who to contact: you, and the treating specialist or GP.
We are developing a downloadable version of this, along with a one-page summary for teachers and relief staff. Let us know if that would help you, because it moves it up the list.
Work and study
Your rights
Australian employers have obligations under disability discrimination law to make reasonable adjustments. You choose whether to disclose, but adjustments generally follow disclosure.
Adjustments that help
Flexible or reduced hours, working from home on flare days, a sit-stand desk, reduced manual handling, parking closer to the entrance, and leave that recognises appointments.
Support available
The Commonwealth's JobAccess service provides free workplace assessments and can fund equipment and modifications. Ask about it before assuming a change is unaffordable.
NDIS, Medicare and Centrelink
Navigating these is a job in itself. Here is what actually matters for HPP.
Access is about function, not diagnosis
This is the point most people get wrong. The NDIS does not work from a list of qualifying conditions. You will not find HPP named anywhere, and looking for it is a dead end.
Access turns on whether you have a permanent impairment that substantially reduces your functional capacity across areas like moving around, self-care, learning, communicating, socialising and managing daily life, and on whether you are likely to need support for life.
You also need to be under 65 when you apply, and an Australian citizen, permanent resident or protected special category visa holder.
What makes an application stronger
- Evidence from a treating specialist, not just a GP
- A clear statement that the impairment is permanent and unlikely to improve with available treatment
- Concrete functional detail, so not “has bone pain” but “cannot stand for more than ten minutes, cannot carry shopping, needs assistance with stairs”
- An occupational therapy functional assessment where you can get one
- Consistency across everything you submit
For children under nine there is a separate early childhood pathway. NDIS general enquiries: 1800 800 110.
Chronic condition management
HPP is a chronic condition, which means your GP can prepare a GP Chronic Condition Management Plan. These replaced the old GP Management Plan and Team Care Arrangements from 1 July 2025, so older guides online are out of date.
A plan sets out your goals and the team involved, and can open access to subsidised allied health such as physiotherapy, occupational therapy and dietetics, within an annual cap. Ask your GP directly about it, and about registering with MyMedicare, which is linked to the new arrangements.
Income and carer support
Depending on circumstances, the following may be relevant. All are administered by Services Australia and all require medical evidence:
- Disability Support Pension, where impairment is permanent and substantially limits work capacity
- Carer Payment and Carer Allowance, for someone providing daily care
- Companion Card, a state-run scheme giving a carer free entry to participating venues
Getting the medical evidence right is most of the battle. Ask your specialist to describe function and permanence explicitly, not just the diagnosis.
Emergencies, hospital and travel
Most emergency department staff will never have seen a patient with hypophosphatasia. Walking in with the information already written down changes the encounter completely.
Keep this with you
- Your diagnosis in writing, with the specialist's name and contact
- A note that alkaline phosphatase is expected to be low, so that it is not flagged as a lab error
- A note that fractures may heal slowly and that healing should not be assumed on a normal timeline
- A note that bisphosphonates and denosumab are generally avoided
- Your current medicines, allergies and Medicare number
- For anyone on enzyme replacement therapy: the dose, schedule and storage requirements
Travelling? Carry a letter from your specialist, keep medicines in hand luggage in original packaging, check cold-chain requirements before you fly, and look up where the nearest major hospital is at your destination.