Being newly diagnosed with polycystic kidney disease (PKD) can feel overwhelming. You may have questions about PKD symptoms, what causes PKD, and what this diagnosis means for your future.
Take this one step at a time.
What is polycystic kidney disease?
PKD is a genetic kidney disease that causes cysts to grow in the kidneys over time. There are two main types:
- Autosomal dominant polycystic kidney disease (ADPKD) – usually diagnosed in adulthood
- Autosomal recessive polycystic kidney disease (ARPKD) – often diagnosed in infancy or childhood
PKD affects each person differently. Some people experience symptoms early. Others may not notice changes for many years.
→ Learn more about what is PKD?
Common early questions
If you’ve just been diagnosed with PKD, you may be wondering:
- What are the symptoms of PKD?
- Is PKD hereditary?
- Should my family members get tested?
- How fast does PKD progress?
- How do I find a PKD specialist?
We’ve gathered clear, plain-language answers to help you feel informed and supported.
→ Find answers about PKD symptoms and progression
→ Learn about genetic testing and screening for PKD
Talking with family
Because PKD is hereditary, many people face difficult conversations after diagnosis.
We provide tools to help you talk with:
- Adult children
- Partners
- Parents
- Extended family
→ Read our guide on talking about a PKD diagnosis
You don’t have to process this alone
It’s normal to feel shock, fear, or uncertainty after a diagnosis of polycystic kidney disease.
Support – including peer connection and mental health resources – can help early.
→ Find PKD support and community