Support Groups for Phenylketonuria

Support Groups for Phenylketonuria

Rare and chronic diseases such as phenylketonuria (PKU) have an emotional side. Between symptoms, caregiving, and feelings of isolation, coping can be a challenge. It may seem as if hardly anyone understands what you’re going through.

PKU support groups may be able to help.

What is PKU?

PKU is a rare inherited metabolic disorder characterized by the buildup of an amino acid called phenylalanine — a protein building block. We get phenylalanine from our diet and some artificial sweeteners.
In people with PKU, the enzyme that processes phenylalanine does not work properly. That’s why patients need to adhere to a lifelong low-protein diet. While adhering to such a restrictive nutrition plan can be demanding, compliance staves off symptoms that, depending on the disease type, can include seizures, eczema, hyperactivity, intellectual disability, psychiatric disorders, and behavioral problems.
If you’re a caregiver of someone with PKU — particularly someone who is sometimes rebellious diet-wise — maybe you’d like to talk with those who are going through the same thing.

What are support groups?

Support groups consist of people facing similar challenges who meet, in person or virtually, to give support, share practical advice, and offer encouragement to each other. They are run by members and may be attended by both the patient and their family. Most support groups meet regularly — online nowadays due to restrictions stemming from the COVID-19 pandemic — while others may meet only as needed.

Keep in mind that support groups do not take the place of counseling.

Would a support group be a good fit?

Support groups may not be for everyone. Some people may feel uncomfortable talking in a group. If you feel uneasy, consider attending a few times before deciding to discontinue.

Look for a support group that works for you. Ask yourself whether you prefer structure and would enjoy having a group leader, or whether you’d like a less-formal group.

Finding a support group

Ask your child’s physician, counselor, or other healthcare professional for suggestions. You also can ask your friends who might know or go directly to other individuals who have PKU. Your local library or community center may be able to help.

Support groups and related resources

Following is a list of some PKU support groups or resources that may connect you with other families affected by the disease:


Last updated: May 28, 2020


Phenylketonuria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website


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