Let's Talk About Ph1!

Are you looking
for more information
on primary hyperoxaluria type 1?

The Mighty has put together this list of facts to help raise awareness of PH1.

What is primary hyperoxaluria type 1?

PH1 is a genetic rare kidney disease.

PH1 causes the body to make too much oxalate, which can combine with calcium to form calcium oxalate crystals and calcium oxalate stones (a type of kidney stone), as well as cause other serious kidney damage.

ph1 runs in families

PH1 is an autosomal recessive disease, which means that a person must have two copies of the gene (one copy from each of your parents) in order to be affected by the disease.

In other words, it’s passed down from parents to children. So if a person has PH1, it’s possible that their children or siblings may also have PH1.

PH1 symptoms typically first appear in children and young adults.

While PH1 symptoms can begin at any time between infancy and adulthood, most people experience their first symptoms in early childhood.

However, some people with PH1 may not experience mild symptoms until 40 or 50 years of age (and sometimes even later).

Kidney stones are the most common symptom of PH1.

Kidney stone symptoms are different for each person and often vary depending upon the size of the stone, but the most common symptoms of kidney stones include:

Pain or burning when
you urinate

Blood in your urine

Cloudy or foul-smelling

Sharp pains in your side,
back or lower belly

Fever and chills

Feeling sick to your stomach
or throwing up

PH1 is more than a kidney stone disease.

Kidney stones are often the earliest sign that you may have PH1, but it's important to note that PH1 is more than a kidney stone disease and that someone diagnosed with PH1 may not experience kidney stones.

Even if your body is not forming stones, too much oxalate can cause serious harm to your kidneys and may lead to kidney failure.

Kidney failure, sometimes called end-stage renal disease, means your kidneys stop working well enough for you to survive without dialysis or a kidney transplant.

In PH1, early diagnosis can help.

That’s why early diagnosis of PH1 is so important. The earlier you are diagnosed by a health care professional, the earlier you can start treatment.

If you or a loved one has ever experienced (or is currently experiencing) any of these symptoms, we encourage you to talk to your doctor about what might be causing them.

with PH1

If you are affected by PH1, you don’t have you go through this alone. Finding a support system - whether your doctor, loved ones, or others in the community - can be incredibly helpful.

Don’t be afraid to share your experiences or ask others for help and emotional support when you need it.

Do you want to learn more about PH1?

The Mighty is here to support you along your PH1 journey.

For more information about PH1, including resources, events, and a place to chat freely about your experiences, check out our PH1 topic page.