Kidney Nutrition Institute is a collective of Renal Dietitians. While we have been aware of what PKD is and the impact it has on those who live with it, it wasn’t until we began working closely with the PKD community while developing the RISE program that we recognized the need for more visibility, support, treatment, and resources.
Fortunately, we aren’t the only ones who recognize this critical need. For example, researchers from Australia wondered, “what are the information needs and concerns of people living with PKD?”
They found individuals with PKD on social media and discussion forums and used social listening and surveys to answer these questions. The results of the study found four significant themes of concern (1):
- That PKD is a challenging journey
- A need for information
- Dietary concerns
- A need for practical resources
While much work is still needed to address these concerns, we wanted to share some of our favorite resources and tools that we have so far.
Mindset Matters
A challenging journey
Many survey respondents expressed the challenges of living with PKD. From pain and uncertainty to figuring out what to eat.
With anything in life, the right mindset matters! And because living with a genetic and progressive disease takes both a physical and emotional toll, having the right coping tools is vital.
At Kidney Nutrition Institute, we include mindset as an integral part of our client care. It’s that important, it has become a regular practice that we use ourselves. Everyone benefits from mindset work and stress reduction strategies!
Self-care is more than what you eat! So, in addition to a healthy diet, here are a few of our favorite strategies for a whole person, whole health approach to managing stress, and mindset:
- Exercise
- Sleep
- Limit alcohol
- Meditation
- Yoga or Tai chi- mindfulness-based exercise
- Journaling
- Spirituality and prayer
Another incredible tool that we often use is the four steps of Mindful Action.
Noticing thoughts that aren’t serving us without judgment and shifting our focus to what we want to feel instead is a powerful way to rewire the brain and use mindset to our advantage.
Finding Community
It’s easier than ever to connect with people around the world who are living with PKD.
Knowing that you are not alone on the journey and communicating with others who understand the challenges of living with PKD is crucial.
While in-person support groups may be available, connecting online may be easier for some.
Here are a few of our favorite online groups for individuals with PKD. If you find value in any other groups, please share in the comments below!
Resources:
A need for information and practical resources
Sometimes it feels like technology can be a curse, but it can also be a blessing! The internet provides us with endless amounts of information. However, it can be hard to know where to turn for the most trusted source.
The list below includes some of our favorite trusted resources to find anything from kidney-friendly recipes to the latest research. We’ve also included several well-established foundations for both Polycystic Kidney Disease and kidney disease.
Please let us know in the comments if we have missed any helpful resources!
- PKD Foundation
- National Kidney Foundation
- American Kidney Fund
- ADPKD Questions
- PKD Charity
- RISE.org
- NephU Nutrition & The NephChef
Dietary concerns
We know firsthand the difficulty of finding a Registered Dietitian who specializes in kidney disease and PKD.
Kidney Nutrition Institute was born out of a passion for helping people with kidney disease use the power of nutrition to support kidney health.
We have learned so much from collaborating with researchers about the latest findings on the impact of diet on PKD progression. This collaboration led to the development of the PKD-specific, low-oxalate, whole-foods ketogenic diet (PFKD).
You can learn more about our approach at the RISE website and even sign up for a three-day meal plan right from the home page!
Finding a Renal Dietitian:
Want to meet one-on-one with a compassionate practitioner who loves food and helping people with kidney disease achieve their health goals? Then you need to find a Renal Dietitian, and we can help you find one!
Check out the list below to find a Renal RD in your area:
- Right here at the Kidney Nutrition Institute
- The NKF CKD Kidney Dietitian Directory
Recipes:
The KidneyRD.com provides plant-forward kidney-friendly recipes for people living with chronic kidney disease (CKD) and PFKD recipes.
We’re looking forward to getting more PFKD recipes posted soon, but in the meantime, check out a few of our favorites!
- Pineapple coconut keto smoothie
- Flax cracker crisps
- Pumpkin and artichoke hummus
- Sweet ginger roasted pumpkin seeds
- Cucumber & Basil yogurt bowl
Mindset Matters for PKD!
As we continue to learn more about PKD and identify the gaps in research, information, and support- we feel hopeful. Hopeful that the list of resources will continue to grow, hopeful that more healthcare workers will better understand PKD, and hopeful that more visibility and research will drive treatment to #endPKD!
We are grateful to be a part of a novel approach to nutrition therapy that can impact the progression of PKD.
If you want to learn more about the science-based nutrition approach designed for people with PKD, visit the RISE PKD Nutrition program. Ready to get started? Sign up now for the next available program, or schedule your free discovery call today!
