Help and Support
One of the reasons why living with ADPKD can be so difficult is that it is a silent, isolating disease. The general public—including schools and employers—know little or nothing about it, and even close friends can find it difficult to understand how you are feeling.
There is no need to feel alone. Help and support is there when you need it, whether from family and friends, other people with ADPKD, the PKD Charity or your doctor, a counsellor, faith leader or other professional.
The PKD Charity
People often find that they feel less alone if they share their feelings with others with ADPKD who understand what they are going through. The PKD Charity has an online support group and Facebook group, as well as Information days where you can meet other people with PKD, and listen to experts present the latest information on the disease. You may also wish to join other groups or web-based forums aimed at anyone with chronic kidney disease.
- PKD Online Support Group for people in the UK affected by polycystic kidney disease, their families and carers
- The PKD Charity Facebook Group
- Your local kidney patients association: see the list at the National Kidney Federation website
- Kidney Patient Guide forum. A general forum for people with kidney disease and their families
- Renal Patient View forum. This site enables people who are being managed by a hospital renal (kidney) unit to view information about their diagnosis, treatment and latest results online. It is only available if your kidney unit has opted to join Renal Patient View.
Talking to your doctor is important. You may need medical treatment if you have severe symptoms of depression or anxiety, and physical problems may be contributing to any sexual difficulties. Your doctor may also refer you for counselling, cognitive behaviour therapy, or sex and relationship therapy.
Counselling and psychological therapy
The aim of counselling and psychological therapy is to give you a safe, confidential place to talk about your worries and feelings. The therapist is not there to give you advice or tell you what to do. Instead, the therapist will help and support you to improve your life. There are many types of therapy, ranging from counselling to psychological therapies such as cognitive behaviour therapy (CBT). Doctors often recommend CBT as an alternative to medication for people with mild to moderate symptoms of depression, anxiety or other psychological difficulties.
- Find a counsellor at the British Association for Counselling and Psychotherapy.
- Find out more about cognitive behaviour therapy and find a therapist at the website of the British Association for Behavioural and Cognitive Psychotherapists.
Sex and relationships therapy
Sex and relationship therapy helps both individuals and couples work through their problems in a confidential and supportive environment. Your GP may be able to refer you to a therapist, or you may prefer to refer yourself for private sessions.
- Find a therapist at the College of Sexual and Relationship Therapists website.
- Relate offers advice, relationship counselling, sex therapy and support. There is a search engine to help you find your nearest therapist.
On other pages
The information on this page is under review by the PKD Charity using the accredited Information Standard process.
PKD Charity Helpline: The PKD Charity Helpline offers confidential support and information to anyone affected by PKD, including family, friends, carers, newly diagnosed or those who have lived with the condition for many years.
Disclaimer: This information is primarily for people in the UK. We have made every effort to ensure that the information we provide is correct and up to date. However, it is not a substitute for professional medical advice or a medical examination. We do not promote or recommend any treatment. We do not accept liability for any errors or omissions. Medical information, the law and government regulations change rapidly, so always consult your GP, pharmacist or other medical professional if you have any concerns or before starting any new treatment.
© PKD Charity 2014 | www.pkdcharity.org.uk
Registered charity No 1160970 / SC038279