With official recognition, September 4th can help shine a light on one of the most common, life-threatening kidney disease that few have heard of
OTTAWA, Aug. 31, 2015 /CNW/ - When Ottawa resident Gina Hedges and her sister went to get an ultrasound 20 years ago to see if they were kidney donor matches for their mother, they were told that they would actually be in need of a donor themselves one day.
Gina, her mother and her sister all have polycystic kidney disease (PKD).
There are two types of polycystic kidney disease (PKD): autosomal dominant (ADPKD), which is what Gina, her sister and her mother have and autosomal recessive (ARPKD). ADPKD is the most common form of PKD, affecting about one in 500 men, women and children in Canada, whereas ARPKD is more severe and impacts only children, affecting one in 20,000.1 PKD is a life-threatening, genetic disease that causes multiple cysts to form on the kidneys, resulting in massive enlargement of the kidneys (up to three to four times their normal size) and can impact the function of surrounding organs, like the liver.2 ADPKD can also lead to deterioration of kidney function and in some cases, kidney failure.3
PKD is more prevalent than widely-known diseases such as Huntington's disease, cystic fibrosis, sickle cell anemia, muscular dystrophy, Down's syndrome and hemophilia combined.4
"I refer to PKD as the most common disease that people haven't heard of," says Dr. Phil McFarlane, nephrologist and medical director of home dialysis at Toronto's St. Michael's Hospital.
For Gina, National PKD Awareness Day is an opportunity to raise awareness about an unknown disease that has rippled through her family and has claimed the lives of those nearest to her.
On September 4th, join us alongside Mayor Jim Watson as he publically declares his support for National PKD Awareness Day in Ottawa and throughout Canada to show PKD sufferers and their families that we are fighting alongside them to battle this devastating disease.
When: Friday, September 4, 2015 / 10-10:15 a.m. (EST)
Where: Ottawa-Carleton Dialysis Clinic (780 Baseline Road, Ottawa, ON, K2C 3V8)
Available interview opportunities:
- Mayor Jim Watson (pending availability day of): can speak to his declaration of support for the National PKD Awareness Day and the PKD community.
- Gina Hedges (PKD Foundation of Canada Chapter Coordinator in Ottawa): can speak to her journey with ADPKD, how she currently manages her disease and why getting involved in the community has been so important to her.
- Dr. Swapnil Hiremath (Nephrologist, The Ottawa Hospital): can speak to the recent changes in the ADPKD treatment landscape and the importance of knowing your family history and early diagnosis.
- Jeff Robertson (Executive Director, PKD Foundation of Canada): can speak to how the organization is helping to advocate for further research and support
*All spokespeople are available for interview before and/or after the event.
1 The Kidney Foundation of Canada. Polycystic Kidney Disease. Page 4. Available at: http://www.kidney.ca/document.doc?id=324. Accessed: July 2014.
2 Polycystic Kidney Disease Charity website. Fast facts about ADPKD. Available at: http://pkdcharity.org.uk/about-adpkd/just-diagnosed/fast-facts-about-adpkd. Accessed: August 2014.
3 National Kidney and Urologic Diseases Information Clearinghouse. Polycystic Kidney Disease. Available at: http://kidney.niddk.nih.gov/kudiseases/pubs/polycystic/#dominant. Accessed August 2014.
4 Mansoumi, Amirali et al. Developments in the management of autosomal dominant polycystic kidney disease. Ther Clin Risk Manag. 2008 Apr; 4(2): 393–407. Available at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2504069/. Accessed: August 2015.
SOURCE PKD Foundation of Canada
Image with caption: "PKD Foundation of Canada (CNW Group/PKD Foundation of Canada)". Image available at: http://photos.newswire.ca/images/download/20150831_C5229_PHOTO_EN_486598.jpg
For further information: To confirm your attendance at the event or to arrange interviews, please contact: Erin Collett, Edelman, 416.849.8911, [email protected]