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For caregivers of loved ones with PH
As a primary hyperoxaluria (PH) caregiver, you play a critical role in the treatment of your loved one. You are the one in charge of providing care at home, keeping specialists organized, managing appointments, and advocating for your loved one on every phone call.
While we talk a lot about the burden of living with PH, this condition can also be hard for caregivers. Supporting a loved one with a rare disease like PH is a demanding job on top of other personal and professional commitments you may have—and, at times, it may feel overwhelming or isolating.
Tips to help deal with the burden of being a PH caregiver
Find your community
PH is a rare disease, and it can be hard for others to relate to what you are going through as a caregiver—but you are not alone.
- Connect with people facing similar challenges, including caregivers for people with rare diseases other than PH
- Join PH support groups or forums, such as private groups on social media, can help alleviate feelings of isolation, and you may be able to share tips with other caregivers of people with PH
There are many helpful places online where rare disease caregivers can find information and community.
Prioritize your own health
While your own needs may take a back seat to the needs of a loved one with PH, it is important for you to look after your own emotional and physical health as well.
Recharge to be at your best
When possible, find another trusted person to share the responsibility of caregiving so that you can take some time to recharge.
Keep it all organized
Keep contact information for healthcare providers and other essential PH information organized and readily available. Try putting it all on a single document that you keep on your fridge or desk, or take a picture with your phone so you can access it anywhere. You can also share a copy with your child’s school.
Handling unsolicited advice
People may give you advice you did not ask for. Some don’t understand what’s required to be a caregiver. Some may know what it takes, but you’ve heard it all already. It can be frustrating, but their advice is well intentioned. If you don’t feel up to talking about PH, you can always direct them to a site like this one.
When it gets to be too much
If you are feeling burnt out or overwhelmed from being a PH caregiver, you may want to speak to an expert like a mental health professional. There is no shame in seeking this kind of help. Like other tips above, it can be a valuable way to ensure your needs and health are taken care of along with your loved one’s.
Answering questions
As a caregiver, you may hear some questions about your loved one’s PH over and over again. Below are some common questions people may ask you, as well as some ideas for how you can respond. You can also download the resources below.
What is primary hyperoxaluria? I’ve never heard of it.
PH is a very rare genetic disease. It causes their 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 their body.
How did they get it?
PH is a genetic disorder, so they were born with it.
Do they really have to drink that much water? What happens if they don’t?
Yes! Drinking lots of water helps their body dilute the oxalate, helping to protect their kidneys. For them, drinking water is a little like a person with diabetes taking insulin. If they don’t drink enough water all day every day, they can have serious health consequences, including kidney stones and major kidney damage.
Why do they have so many appointments?
Some appointments are to monitor their kidney health and to make sure their PH is in check. This is important because their kidneys could go into decline without them realizing. Other appointments are for monitoring kidney stones to determine whether they’ll need a kidney stone removal procedure.
Get updates
Get email updates on PH treatments and news. You can also receive resources that may help you or your loved one manage PH.
Looking for support with a child who has PH?
Find tips for keeping organized, helping kids drink more water, and getting a 504 plan.
