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Siblings & Caregivers

Everyone is important.

We recognize that people with PKU are surrounded by people who work hard to help manage diets and treatment plans, as well as provide emotional and practical support. Sometimes the needs of their siblings and caregivers can feel forgotten.

At the NPKUA, we support the entire PKU community, including siblings and caregivers. We believe caring for the caregiver and supporting the family is as important as supporting the person with PKU.

Here are some of the steps you can take to take care of yourself:

Talk with others

Whether you’re a sibling or a caregiver, speaking to others in the same situation can make your journey easier. It affords you opportunities to share ideas and tips while building your own relationships within the community. We offer a number of ways to get in touch with others in the community, including the NPKUA Mentor Program and our Community Calls.

Leaving your Child with Someone Else

Trusting others to care for your child with PKU can be stressful. Thankfully, there are resources to help explain PKU to others and to provide advice about how to care for them. Nutricia’s guide for babysitters is a great resource and it’s customizable to meet your child’s specific needs. There’s also a grandparent-specific guide that may be helpful, too.

Take care of yourself, too

It’s easier said than done, but caregivers need to take care of themselves, too. It can be hard to find the time to focus on you when you are caring for a loved one with PKU, but research shows it is important.

Caring for a child with PKU is crucial to their long-term success. The work you put in now to help them with their diet, educate them about managing PKU for the long-term and ensuring they are getting the nutrients they need will help them grow into adults who are better equipped to manage PKU.

But all you put in to take care of them leaves little time for you to care of yourself. The mental and physical toll of caretaking means caring for the caregiver is incredibly important.

Here are some helpful resources:

  • The NPKUA Event Calendar includes national and regional events where caregivers can meet other families living with PKU. Events
  • The NPKUA Mentor program provides the opportunity to connect with other caregivers, learn more and connect here.
  • The National Organization for Rare Disorders (NORD) caregiver resource offers educational and financial resources to support your efforts

Cooking and Food

Part of taking care of yourself is finding tips and shortcuts to taking care of your family’s needs, which become even greater if you have a loved one who has PKU. When it comes to cooking, we can help. There are lots of resources available for the low-protein diet that can offer great suggestions and recipes. Cooking and Food

Insurance Coverage

When it comes to insurance, it can be very confusing, but we’re here to help and to take the confusion out of it with information, explanations, and resources. Insurance information

Resources for Siblings

Being a sibling to someone with a rare disease creates a unique dynamic and can be tough. Siblings can sometimes be very involved in caring for their brother(s) or sister(s) who have PKU and may know what foods they need to avoid from an early age. Sometimes, this can mean that siblings may help their parents with care for their brother(s) or sister(s) with PKU.

This relationship can sometimes make siblings worry, create resentment about how much time parents spend with the sibling with PKU, or anger about how the family’s life revolves around their brother(s) or sister(s) with PKU. These feelings and dynamics can be fleeting or lingering. They’re important to acknowledge and work through.

Here are some helpful resources: