Living with PKD

Polycystic Kidney Disease (PKD) can have a massive impact on people’s lives, and can affect whole families.

ADPKD (Autosomal Dominant PKD), one form of PKD, often doesn’t present itself until adulthood, and so parents can unknowingly pass down the disease to their own children, which can cause significant anxiety and guilt.

In ARPKD (Autosomal Recessive PKD), families have to cope with the shock of a child born with a potentially life-limiting disease.

PKD can have a massive emotional and physical burden on people every day, negatively affecting families, relationships and social lives as well as causing persistent and debilitating pain.

For someone living with ADPKD their kidneys can swell to four times their healthy size and weigh up to 100 times more, which can cause their stomach to expand. This can lead to a debilitating life of fatigue, long-term pain and kidney failure.

PKD belly

Family life with PKD

Craig and his 5-year-old son Charlie have Polycystic Kidney Disease (PKD), an inherited disorder of the kidneys, that affects not only their lives, but the lives of their entire family.

Watch below as Craig, and his wife Kay, talk about their experiences of PKD, explaining what life is like for them and their family living with the condition.

Supporting those affected by PKD

For people living with Polycystic Kidney Disease (PKD), life can be challenging.

Luckily, there are a number of groups that offer support, including information, advice, online forums, awareness and education days, sharing print and online materials and annual meetings.

If you are living with PKD, or know someone who is, you can contact these groups for help and advice about medication, lifestyle choices or if you just need someone to chat to.

Find out more about which groups are accessible to you here:

PKD International is a global network of patient organisations dedicated to advocating for patients and families affected by all forms of Polycystic Kidney Disease (PKD). PKD International is a non-profit, non-governmental association registered in Geneva, Switzerland.