My evening at the Tolvaptan Extravaganza Gala
If someone would have told me when I was 19 and on death’s doorstep because of PKD, that in 13 years I would share my triumph over adversity by attending the launch of the first treatment for PKD in Canada – my family and I would have been in utter disbelief.
Since my diagnosis, I had hoped to live to see the day that a treatment would be found for PKD so others would not have to suffer from this disease like my family and I have. I am grateful to have survived to witness this glorious milestone, and incredibly honored to be the keynote speaker at the Tolvaptan Extravaganza Gala in Montreal, Quebec on May 4, 2015. Tolvaptan was approved in Canada as a treatment for autosomal dominant polycystic kidney disease (ADPKD) in February 2015.
As an international ambassador for PKD, I was invited to share my compelling personal journey to help paint a picture of life with PKD. With my dedication to the cause and positive voice for patients and families suffering from PKD, it was a privilege to be asked to represent the PKD community.
Below is the finale of my speech that I presented on the historic evening:
“This work is fundamental. It is an amazing honor to be able to share my voyage with PKD, but I am just one of the 12.5 million people worldwide living with this. There are the patients with such enlarged kidneys that they look pregnant. The children that do not survive much past birth because they have ARPKD. The caregivers that tirelessly battle this disease right beside the patients. The generations after generations of people fighting PKD and losing loved ones.
Coincidentally, today is my mom’s 59th birthday. She is the oldest in our immediate family to survive this disease. I am overwhelmed with emotion to be celebrating the launch of the first treatment for PKD in Canada on my mom’s birthday. I hope my late grandmother; aunt and everyone else who has died from PKD are having a big celebration like we are today! I hope I am making them proud. I know I am proud to represent the PKD community today.
My transplant has given me the opportunity to live life to its fullest with every cell of my being. I feel that tolvaptan will do the same thing for patients. You could call transplant my temporary treatment; however it won’t last forever like the positive effects tolvaptan will have on patients. An important component of this treatment for PKD is that it gives hope, which I have learned firsthand is more powerful than anything! Hope reenergizes us, gives us something to look forward to, something to cling onto, something to believe in.
My wish is being fulfilled that others won’t have to suffer the full effects from PKD like my family and I have, where dialysis and transplantation are the only treatment. Lives will change for the better thanks to the release of tolvaptan in Canada. Tolvaptan is turning what we thought was seemingly impossible into the possible. Otsuka’s release of the first treatment for PKD in Canada is the hope leading towards a cure for PKD.”
As I exited the stage, “Somewhere Over the Rainbow,” a special song for my mom and me, filled the room. The delightful Allison Rosenthal, General Manager of Otsuka Canada, greeted me with a bouquet of flowers and shared with the audience endearing words of support that my mom and family are proud of me. It was encouraging and inspiring to meet such wonderful, dedicated, kind-hearted individuals who are researching and working hard to help change our lives for the better. I held the entire PKD community close at heart. It was an evening I will forever treasure.
While tolvaptan has yet to be approved in the United States, approval in Canada (as well as Japan and recently in Europe) is a step forward in the PKD community as a whole. My hope is that approval in the U.S. is not too far away, and that this shows a vote of confidence by other countries.
Help find treatments like tolvaptan by getting involved in clinical studies
The only way to find treatments like tolvaptan is for people diagnosed with PKD to take part in clinical studies. There are many studies currently testing potential therapies and they need participants.