Written by Meyeon Park, MD, MAS, director of the UCSF Polycystic Kidney Disease Center of Excellence at UCSF Health, University of California, San Francisco.
Dr Park is a paid consultant of Otsuka America Pharmaceutical Inc.
Life with a rare kidney disease can be an isolating experience for many patients. To help patients to deal with this feeling, patient support groups can provide new perspectives and guidance for rare disease communities. There are a variety of peer-based resources that may be beneficial for any person living with autosomal dominant polycystic kidney disease (ADPKD) – a rare kidney condition that causes cysts to grow in and enlarge both kidneys overtime. These communities can better prepare patients and their loved ones when they are faced with difficult decisions.
ADPKD-related effects can play a major role in an individual’s everyday life. Therefore, patients and caregivers should feel empowered to learn about ADPKD and effective management strategies. With 140 000 Americans living with ADPKD, this community is close-knit and passionate about proactively spreading awareness and education to support others facing similar diagnoses.
While patients should always rely on their clinician for medical care and advice, getting support from peers is also a helpful tool for discussing living with ADPKD with someone who also lives with the condition. For example, the ADPKD Peer Mentor Program is a resource that connects patients and caregivers with an individual who can relate to their situation. Through this program, individuals in the PKD community are paired with a kidney disease advocate to help initiate conversations outside of the clinician’s office concerning ADPKD, communicating with friends and family and more. Individuals seeking peer support can register at ADPKDPeerMentorProgram.com to hear directly from patient ambassadors about their personal stories, challenges, and insights they use to help manage their own condition.
For patients with ADPKD looking to grow their families, peer resources can be helpful while navigating this time. Becoming a parent is exciting but potentially daunting and reaching this decision through open communication with everyone involved, from spouses to medical teams, allows for the opportunity for patients with ADPKD to address any potential obstacles. For those living with ADPKD, having early conversations about family planning is important given the unique genetic challenges that could impact the child.
With each child having a 50% chance of inheriting ADPKD from a parent, knowing what resources and programs are available to support these conversations about pregnancy or parenthood can help mitigate feelings of guilt or uncertainty. In my practice, I address these concerns at each stage of family planning to consider proactive management steps that patients can take to achieve optimal kidney health and improved emotional wellbeing. However, whether someone is a new mother who has discovered an ADPKD diagnosis while pregnant, or part of a couple embarking on an in-vitro fertilization journey, hearing directly from other patients who have faced similar challenges may be more impactful from a patient perspective for emotional support.
Learning about an ADPKD diagnosis can be daunting. Determining the best course of action can begin by having a preliminary conversation with a clinician about health history to provide an oversight of a diagnosis including the risk of progression and next steps for preventative care. Prioritizing routine check-ups with a nephrologist also remains key to monitoring disease state trajectory and strengthen a patient’s understanding of ADPKD.
Fortunately, there are available patient tools, such as community support registries, to help individuals prepare for these conversations with a clinician, family member, or peer. For reference, ADPKDQuestions.com is a site that provides a variety of helpful tools for patients with ADPKD and caregivers. This online hub includes downloadable resources and information on foundations and advocacy groups dedicated to their patient population to help improve overall awareness and ADPKD education.
With a variety of resources available to help the ADPKD community, patients can leverage these resources and support systems as they work closely with their medical care teams.