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Share your PKD Story

Thank you for sharing your experience to help raise awareness of Polycystic Kidney Disease. Whether you choose to write your story or record a short video, we’d love to hear from you. There’s no need to make it perfect - we want the real you!

So we can contact you if we need any further information or before sharing your story.
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Tell us about your PKD journey in your own words.
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Life with ADPKD

LIfe with ADPKD

This section focuses on the day-to-day experience of living with ADPKD, including physical, emotional, and practical aspects. You’ll find guidance and support to help you manage your condition and maintain your quality of life.

To find out more about the many ways we offer support for those affected by PKD, please see our Get Help page.

  • Diet and lifestyle in ADPKD

    Diet and lifestyle choices can play an important role in managing ADPKD. This resource explains practical steps to support kidney health in everyday life.

    Diet and lifestyle in ADPKD

  • Wellbeing

    Living well with ADPKD involves balancing your health, wellbeing, and daily activities. This resource offers guidance to help you maintain a good quality of life.

    Living well

  • Appointment tips

    Preparing for appointments can help you get the most out of your care. This resource offers practical tips to help you feel informed and confident when speaking to healthcare professionals.

    Appointment tips

  • Pregnancy and ADPKD

    ADPKD can raise questions around pregnancy and planning a family. This resource explains potential risks and the support available before, during, and after pregnancy.

    Pregnancy

  • Employment advice

    Work and career plans can sometimes be affected by living with ADPKD. This resource outlines key considerations, your rights, and the support available.

    Employment advice

  • Financial advice

    PKD may affect your ability to work, or mean you reduce your hours. This can have a knock-on effect on your finances. This page explains where to find financial advice, including about the benefits you might be entitled to.

    Financial advice

  • Insurance

    Getting insurance can be a real problem for people affected by PKD. If you are looking for health, travel, life or critical illness insurance, we give you information on finding the best options.

    Insurance

Read more …Life with ADPKD

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Dialysis

Dialysis

ADPKD and pregnancy

  • Close up shot of a dialysis machine

    Introduction to dialysis

    Dialysis is a treatment that takes over some of the kidney’s functions when they can no longer work effectively. This resources gives an overview of dialysis and the types of dialysis avaiable.

    Introduction to dialysis

  • A man relaxed in a clinic chair beside a haemodialysis machine. The man has two tubes connected to his arm, carrying blood to and from the machine. The tubes are taped to his arm.

    Haemodialysis

    This section explains more about haemodialysis, the most commonly used type of dialysis, where a machine filters your blood to remove waste and fluid.

    Haemodialysis

  • A photo of a woman sat in a chair reading a book while doing a dialysis fluid swap. A bag of fluid hangs from a stand. A tube from the bag connects to her peritoneal catheter, unseen under her t-shirt.

    Peritoneal dialysis

    This section explains more about peritoneal dialysis, a less commonly used type of dyalisis, where a special type of fluid is added into a space in your abdomen (tummy). 

    Peritoneal dialysis

Read more …Dialysis

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Medicines

Medicines

ADPKD and pregnancy

  • A pile of medicine blister packs, some pink, some white, one pack of yellow

    Medicines to treat ADPKD

    Medication plays a role in both slowing the progression of ADPKD and managing its symptoms. This resource explains the treatment available.

    Medicines to treat ADPKD

  • A young girl, staring at the camera, hand raised to say 'stop'.

    Medicines to avoid

    Some medicines may not be suitable for people with ADPKD. This resource highlights what to be cautious about and when to seek medical advice.

    Medicines to avoid

Read more …Medicines

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What is ADPKD

What is ADPKD?

This section provides information about ADPKD (Autosomal Dominant Polycycstic Kidney Disease) including what it is and how it is diagnosed.

To find out more about the many ways we offer support for those affected by PKD, please see our Get Help page.

  • Illustration of a portion of DNA

    ADPKD basics

    Learn the basics of ADPKD, including what causes the condition, how it affects the kidneys and other parts of the body, and what it may mean for you and your family.

    ADPKD basics

  • A magnifying glass hovers over a post-it note saying 'DIAGNOSIS'

    How is ADPKD diagnosed?

    Find out how ADPKD is diagnosed, including the tests that may be used and when genetic testing might be recommended. Understand what to expect if you or a family member may have the condition.

    How is ADPKD diagnosed?

  • Illustration of a proliferation of what appear to be molecules - all in shades of blue

    How are cysts formed?

    Learn how cysts develop and grow in ADPKD, and how these fluid-filled sacs can affect the kidneys over time. Understand the role cysts play in the progression of the condition.

    How are cysts formed?

  • On the right a pipette secretes a drop of liquid into a petri dish, on the left a photo of DNA test results with the vertical stripes and horizontal multicoloured bars

    Genetic testing and counselling

    Learn about genetic testing and counselling for ADPKD, including when testing may be helpful and what the results could mean for you and your family. Understand the support available when considering your options.

    Genetic testing and counselling

Read more …What is ADPKD

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Children with ADPKD

Children with ADPKD

This section provides information about how ADPKD affects children, including early signs, diagnosis, and emotional support. You’ll find practical resources to help parents and carers understand the condition and support their child with confidence.

To find out more about the many ways we offer support for those affected by PKD, please see our Get Help page.

  • A girl of around 8-10 years smiles gently and looks down. She has on a stethoscope, in front of her we see the back of the head of a woman who appears to be communicating with the girl

    Symptoms and testing in children

    Learn about the signs of ADPKD in children and how the condition is diagnosed, including when testing may be recommended. This resource helps you recognise early indicators and understand the testing process.

    Symptoms and testing in children

  • A woman and child sit on a sofa holding hands. The woman seems to be talking to the girl. To the left of the girl  on the sofa is a white stuffed toy.

    Talking to your child about ADPKD

    Learn how to talk to your child about ADPKD in an honest, age-appropriate way. This resource helps you support their understanding while building reassurance and trust.

    Talking to your child about ADPKD

Read more …Children with ADPKD

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