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Explaining PH to others

One aspect of living with a rare disease can be the difficulty of explaining your condition to others, especially when you look healthy.

First, you don’t have to explain it. That’s your decision.

If you do want to explain what PH is and how it affects you, it can help if you have some preplanned information to share with people who have questions about your condition. You can also direct them to a site like this one for answers instead.

Addressing questions about PH

People with PH are often asked the same questions over and over again. Here are some of the common questions you may hear, along with some ideas for how you can respond.

What is primary hyperoxaluria? I’ve never heard of it.

PH is a very rare genetic disease. It causes my body to make too much oxalate, which can build up to excessive levels and cause kidney stones and permanent kidney damage. When it’s more severe, it can even cause damage to other organs in my body.

How did you get it?

PH is a genetic disorder, so I was born with it.

Do you really have to drink that much water? What happens if you don’t?

Yes! Drinking lots of water helps my body dilute the oxalate, helping to protect my kidneys. For me, drinking water is a little like a person with diabetes taking insulin. If I don’t drink enough water all day every day, I can have serious health consequences, including kidney stones and major kidney damage.

Why do you have so many appointments?

Some appointments are to monitor my kidney health and to make sure my PH is in check. This is important because my kidneys could go into decline without me realizing. Other appointments are for monitoring kidney stones to determine whether I’ll need a kidney stone removal procedure.

Want to take these tips with you?

We have 2 conversation guides ready for you to download.

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