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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.
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.
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.
PH is a genetic disorder, so I was born with it.
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.
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.
We have 2 conversation guides ready for you to download.
Get email updates on PH treatments and news. You can also receive resources that may help you or your loved one manage PH.
Find tips for preparing for an effective appointment and a Discussion Guide for talking with your doctor.