January 25, 2018

January 2018 PKD e-News


Welcome to the PKD Foundation of Canada's January e-News! Here you will find information important to helping you take action in your journey with PKD. 


Upcoming Toronto Chapter Meeting: New Guidelines for Optimal Management of ADPKD in Adults

February 11, 2018 from 2:00PM - 4:00PM

North York Civic Centre
5100 Yonge St
Community Room #1

North York, ON M2N 5V7

Speaker: Dr. Daniel Sapir, MD.


Meeting Details: Join us as Dr. Sapir walks us through the recently published guidelines on the optimal management of ADPKD in adults. You will have the opportunity to learn more and ask your questions about:
  • The role of genetic testing
  • The role of renal imaging
  • Predicting the risk of disease progression
  • Pharmacological treatment options for ADPKD
  • Specific recommendations for the treatment of ADPKD with tolvaptan
You can be sure to receive all Toronto Chapter updates by emailing us a request to add you to the Toronto Chapter email list! You can also stay up to date by following the chapter on Facebook.


In the News: Plasmapheresis and Blood-type Incompatible Kidney Transplant

medical_crop.jpgUntil recently, a transplant patient could only receive an organ from someone with a compatible blood type. An organ from someone with an incompatible blood type would be perceived as foreign and vulnerable to attack by the recipient's natural antibodies. Now, through a process called plasmapheresis, a recipient can receive a kidney from a donor of a different blood type. This procedure is currently being provided at a growing number of transplant centers.

Read the full article about plasmapheresis from the National Kidney Foundation here.



PKD-Friendly Recipes: Sweet & Savoury Snacks
Looking for quick, healthy and delicious snacks to add to your kidney diet? Try these recipes for sweet apple muffins and savoury hummus dip! Both recipes pack delicious, fresh flavors with just a few ingredients.


Remember to consult your doctor or dietitian about what recipes and practices are best for you at your stage of PKD.



Advocate Now for Public Coverage in Quebec for the Only Available Treatment of PKD

tablet_photo.jpgNext month, the treatment (tolvaptan or JINARC) will be submitted to Institut national d’excellence en santé et services sociaux (INESSS), the provincial entity responsible for the evaluation of medical treatments, for inclusion on the List of Medications of the Régie de l’assurance maladie du Québec (RAMQ).

As a Quebec resident, your support is critical in educating decision-makers on the impact of PKD, as well as the need for equal access of this treatment. There are several ways Quebec residents can get involved:
  • Complete a short survey (EN / FR)
  • Share your story (EN / FR)
  • Become an ambassador (EN / FR)
Click here to read about the advocacy campaign in French. Find it under the heading "CAMPAGNE DE SENSIBILISATION".


PKD Health Notes: Tips to Keep Your Health Up in 2018

adobestock_177181579-300x200.jpegThe New Year is a great time to reflect on how far we have come and consider new goals for the year ahead. Our friends at the PKD Foundation US have put together some practical tips and tricks to keep your health up in 2018.





BLOG: PKD Will Not Beat Me - Bounce Back, Give Back
(Part 1 & 2)

receiving-award-300x400.jpgIn Valen's most recent blog posts, she shares how her mental and physical determination helped her “bounce back” from her latest hospital stay to make an important trip from California to Colorado.

Part One
"I was in disbelief when I read the thermometer and saw my temperature was 101.2. The first thing I thought of was how Noah and I needed to be on a plane in three days to Aspen, Colo., where I would receive the Bounce Back, Give Back Award from the Chris Klug Foundation (CKF) on top of Aspen Mountain at their annual Summit for Life event. Due to an ongoing and serious illness, I was devastated at the thought of missing this."


Part Two
"Giving back has been a very important part of my journey since 2004 when I first learned of the PKD Foundation. I founded a local Chapter in Pennsylvania and shared my story in front of an audience for the first time in Anaheim, Calif. at a PKD Conference and my involvement continued to grow from there. I quickly learned how giving back gave purpose to all of the trials I have endured and a passion to make a difference in the world. I continue to believe that I’m alive to use my health hurdles to help others."

Keep reading part two.

You can find this two-part blog post, and others written by Valen, here.

PKD Will Not Beat Me is an inspirational place for those seeking a positive environment to meet others with polycystic kidney disease (PKD) - to share stories, to ask questions and to make life-long friendships, encouraging each other to live positively along the way! PKD Will Not Beat Me is written by PKD patient and transplant recipient Valen Keefer.



Voices of PKD: Submit Your Story


Voices of PKD is a collection of testimonials and photos that tell the story of PKD through the eyes of the PKD community. Click on the button below to share your own story and help let others know they are not alone!

 Share Your Story



Voices of PKD: Brenda Conway, Fall River NS
"I was diagnosed with PKD in 2003 at the age of 33. My diagnosis was a shock as I didn’t know of any family members being affected. I reached out to my father’s family in BC, who we had never met, and discovered that my cousin had been diagnosed around the same time I was..." 
Continue reading Brenda's full story on our website.




From The New York Times: Patient Voices - Kidney Disease

NY_Times_Article.jpgChronic kidney disease can be caused by diabetes, chronic hypertension, a genetic factor or a rare disease, and can lead to a renal failure. This New York Times article features five men and women discussing the impact this disease has had on their life, including Anna Bennett, a PKD patient from New York City.




In the News: Researchers Develop Risk Assessment Tool to Predict Future Kidney Disease

Matthew_James.jpgA new tool developed by Dr. Matthew James, from UCalgary's Cumming School of Medicine, is helping doctors assess whether acute kidney injury will progress to chronic kidney disease.

Two groups of patients were studied to hone in on whether acute kidney injury may progress to advanced chronic kidney disease. Over the course of 11 years, data from 9,973 Alberta patients was reviewed with six health measurements routinely taken: age, sex, urine protein levels, kidney function levels when admitted to hospital, kidney function levels throughout hospital stay, and kidney function levels when discharged.

Combined, these factors provided researchers with a framework with which to estimate a patient’s risk level of developing advanced kidney disease over the next year. 

Read the full article featured in the University of Calgary's publication UToday.


Save the Date: March 8 is World Kidney Day

WKD-1024x768.jpgAs part of National Kidney Month in March, World Kidney Day is a global awareness campaign aimed at raising awareness of the importance of our kidneys. This year's theme focuses on women's health, which you can read more about here.

World Kidney Day and International Women’s Day 2018 are commemorated on the same day this year, offering the opportunity to highlight the importance of women’s health and specifically their kidney health.
On its 13th anniversary, World Kidney Day promotes affordable and equitable access to health education, healthcare and prevention for kidney diseases for all women and girls in the world.