Support Groups
Mental Health and Emotional Well-Being
Living with PKD affects more than physical health. A diagnosis can bring worry about the future, questions about passing the condition on to children, and the strain of managing a lifelong illness. Many patients also care for a parent, sibling, or child who has PKD. Our program treats emotional well-being as a core part of care, not an afterthought.
Common challenges we help with
• Anxiety and uncertainty after diagnosis, or while waiting for test results
• Feelings of guilt, grief, or responsibility linked to an inherited condition
• Difficult decisions about genetic testing, screening relatives, and family planning
• Living with chronic pain and fatigue
• Changes in body image as the kidneys or liver enlarge
• Adjusting to dialysis, transplantation, or other major treatment changes
• Depression, stress, and burnout, including for caregivers
How we support patients and families
• Referrals to psychologists well versed in PKD and the challenges of living with a chronic, inherited condition, available in person or by telehealth
• Routine emotional well-being check-ins as part of clinic visits, so concerns are noticed early
• Genetic counseling that addresses the emotional side of test results and family conversations
• Referral to psychiatry and other UCLA Health mental health services when more support is needed
Connection and community
• Peer support through the Circle of CORE Kidney Foundation, connecting patients, caregivers, and living kidney donors who understand the PKD journey
• Educational events and webinars where families can learn together and share experiences
If you or a family member is struggling, please let any member of your care team know. Asking for support is part of taking care of your health.
A support group is a group of people with common experiences or concerns who provide each other with encouragement, comfort, and advice. Patient advocacy and support is one of the UCLA CORE Kidney Program’s greatest strengths. Our ambassadors are matched to appropriate patients according to their stages of renal disease and their needs.
The CORE Kidney Program holds support groups for patients who would like to connect with individuals that share similar experiences as them. If you are interested in the PKD Support Group, please e-mail us at [email protected] with the following subject line: “PKD Support Group.”
Disclaimer: UCLA Health cannot guarantee the accuracy of such information. The information is provided without warranty or guarantee of any kind. Please speak to your Physician before making any changes.