Living with primary hyperoxaluria type 1 (PH1)

In PH1, commitment matters

Although your liver is constantly producing oxalate in large amounts, regular management can make a difference in PH1. With personalised management, those living with PH1 can find ways to stay active and engaged with the people and activities that matter to them.

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Fitting management into your daily life

It can be challenging to manage PH1—from multiple medications, to drinking lots of water, to regular dialysis sessions. Although managing PH1 can be demanding, it’s important to stay motivated to slow the damage to your kidneys by sticking to the management plan you developed with your care team.

Because dehydration can stop your kidneys from working properly, drinking lots of water (hyperhydration) is crucial. It’s important to be aware of situations that can make you dehydrated, such as sickness (as with diarrhoea, vomiting or fever), intense physical activity and not drinking enough water.

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Tips to help stay hydrated

Drinking lots of water (hyperhydration) is an important part of management. Your healthcare professional team and those who are part of your everyday life can support you to help make sure you drink all the water you need.

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How do you stay hydrated?

Looking for new ideas?

Looking for new ideas?

  • Remember to drink as much water as you need to. Consider it an important part of your management routine
  • Make sure you always have plenty of water available
  • Drink even when you’re not feeling thirsty and at regular intervals throughout the day
  • Anticipate frequent bathroom breaks
  • Minimise and address disruptions or interferences with your work, school or activities

Wishing to go the extra mile?

Wishing to go the extra mile?

  • Set alarms on your phone to remind yourself to drink water
  • Bring water with you when going to a new place
  • Use an app to track how much water you drink
  • Keep water bottles filled up around the house, in your car and in all your bags
  • Set deadlines for yourself to drink a certain amount by a certain time

Getting creative with hydration?

Getting creative with hydration?

  • Eat foods with high water content, especially fruits and vegetables
  • Though water is the best way to stay hydrated, you may find it helpful to include other fluids like milk. Be sure to ask your healthcare professional team about these and any other beverages you consume regularly to help you reach your hydration goals
  • Limit the number of sodas and fizzy drinks you have
  • You can also talk to your healthcare professional team about flavour additives, such as powders
  • Designate a specific item (e.g. a water bottle or bracelet) as your “water reminder”, so this serves as a reminder to drink more water whenever you look at it

No matter how you prefer to stay hydrated, be certain to consult with your healthcare professional team to figure out what is best for you.

There is no particular diet for people with PH1 to follow, however some experts suggest avoiding foods that are high in oxalate. You should talk to members of your own healthcare professional team as they may provide some specific guidance based on your individual situation.

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Your emotional health is important, too

For people with PH1, being unable to recognise when you’re experiencing symptoms of kidney disease can make you feel as if you are not in control. It’s been found that people with chronic kidney disease or end-stage renal disease can experience symptoms of anxiety and depression.  If you are feeling overwhelmed, make sure you let your healthcare professional team know, and you can also consider speaking to a mental health professional.

Rare does not mean alone

Being diagnosed with a rare disease like PH1 might make you feel lost and lonely. But you are not alone. Whether it is family, friends, your healthcare professional team and/or local patient groups—there are different people you can talk to about how you are feeling.

If you have questions or concerns about how inherited conditions like PH1 might impact your family, you can speak with a genetic counsellor for support.

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There are other things you can try if you're feeling stressed

  • Practicing relaxation techniques, such as meditation, relaxation or breathing exercises
  • Getting regular exercise
  • Making time for hobbies
  • Journaling
  • Staying connected with friends
  • Setting goals and priorities

Be the author of your own story

No one knows you, or your unique experiences with PH1, better than you do. There are multiple ways you can consider sharing your journey with PH1, like keeping a journal or telling your story to others.

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PH1 Patient Perspectives: Facing an Invisible Disease

Video About Challenges of PH1 Being an "Invisible" Disease
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John C.

Diagnosed with PH1, transplant recipient

There's more support for you

See the resources that can help make living with PH1 more manageable.

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PH1-CEMEA-00005    March 2021

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