Living with PH1, together

Incorporating primary hyperoxaluria type 1 (PH1) management into your life

About PH1

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Welcome to Living with PH1, a site dedicated to educating the primary hyperoxaluria type 1 (PH1) community.

PH1 can present at any time and at any age. When it does, we have resources for you.

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Kidney stones are common in people with primary hyperoxaluria type 1 (PH1)

The most common symptom of PH1 is kidney stones, which form due to too much oxalate being made in the liver.

The impact of PH1

Too much oxalate can be a cause for concern. Oxalate overproduction can damage the kidneys and can affect your body’s ability to filter waste from the blood and to create urine.

PH1 tends to get worse over time

As oxalate is constantly overproduced, it may continuously be doing damage, even when you don’t realise it.

About PH1

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Management matters

PH1 is a progressive disease that may get worse over time. Staying on top of your PH1 management cannot stop the liver overproducing oxalate however your healthcare professional team may recommend approaches to help you better manage the disease, and research is currently undertaken to find ways to stop the liver overproducing oxalate.

Managing PH1

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I draw strength from the community

when it comes to knowing that there are others

out there dealing with the same thing.

Laura W.

Mum of a child with PH1

Living with PH1

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