09/02/2016 06:00 EDT | Updated 09/02/2016 06:00 EDT

Fighting Kidney Disease On Two Fronts

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Woman getting kidney dialysis

The statistics are shocking. one in 10 Canadians has kidney disease and millions more are at risk. Yet, many don't even understand what kidneys do. I certainly didn't understand anything about kidneys until I was personally impacted at a young age.

I watched my father, brother and sister deal with failing health and the grueling treatments of kidney disease. I'm the only one of my father's children without kidney disease. I see the ramifications of kidney failure on a daily basis through my volunteer involvement with The Kidney Foundation of Canada.

My family's PKD story

Polycystic kidney disease (PKD), a genetic kidney disease, ripples through my family. I first heard about kidney disease when my father was diagnosed with PKD -- and later died from complications of a kidney transplant. Those with ADPKD have a 50 per cent chance of passing it on to their children and in my father's case, it was passed on to both of my siblings.

My brother recently passed away from kidney failure, and my sister has just received a kidney transplant. I can say from first-hand experience that families impacted are consumed by this disease.

Five things you need to know about polycystic kidney disease (PKD):

1. It is one of the most common, life-threatening genetic kidney diseases.

2. There are two forms: autosomal dominant polycystic kidney disease (ADPKD) and autosomal recessive polycystic kidney disease (ARPKD).

3. It causes multiple cysts to form on the kidneys, causing them to become very large and kidney function to decline.

4. Early intervention is important to preserve kidney function.

5. A few recognizable symptoms include high blood pressure, lower back pain, blood in the urine and kidney stones. If you're experiencing these symptoms, speak to your doctor.

Through the Foundation and my family, I've seen that those living with kidney disease often progress to an unbearable pain that no one can see, and eventually need dialysis or a kidney transplant -- that is if they're eligible and if they can find a suitable donor. I've seen those living with kidney disease suffer in isolation because they don't want to talk about it or have a hard time communicating what it is like living with a disease when you appear to be healthy from the outside.

This is why we need to continue our fight against kidney disease.

What we're doing to help

The Kidney Foundation of Canada is in the midst of wrapping up its kidney walks in some provinces. The walks are Canada's largest event dedicated to raising funds for kidney research and programs that help support Canadians living with kidney disease. It's events like these that help the Foundation support those who need it most: patients and families.

These walks from coast to coast also build a kidney community and help those impacted feel less alone and give them a more positive outlook on their disease. It is these events that bring patients together with a collective voice to feel empowered and engaged to take action.

Since it was founded in 1964, The Kidney Foundation of Canada has invested over $115 million in research. It is these funds that have helped vastly improve diagnosis treatment options, including the first treatment for ADPKD in Canada that may help slow disease progression. Patients are able to have more treatment options, including being able to dialyze at home -- some even while sleeping, and the success rate of transplants over the long-term has continuously improved.

Additionally, there are programs available to support someone from an initial diagnosis through the lifelong management of kidney disease. These are just some of the efforts being made to help reduce the effects and uncertainty of kidney disease, while helping patients receive the best care possible. None of these would be made possible if it wasn't for our volunteers and their perseverance and continued desire to help the community. It is our patients and their network of support that raise the funds required for research and programs. The voice of advocacy is strongest when led by people who have serious health issues, or their caregivers.

How you can help

A diagnosis of kidney disease is life changing. It has a significant impact on patients and their families as they cope with the negative socio-economic impacts of a disease which requires extreme treatment options -- a lifetime of dialysis, medical management and/or a kidney transplant. None of these treatment options are a cure and lives are often cut short by this insidious disease. Patients need to be empowered to maximize outcomes by being armed with knowledge and the skills to self-advocate. It's time patients stopped living in fear of their futures.

In Canada, we have achieved many milestones in helping people living with kidney disease. We have come a long way from doing experimental transplants without anti-rejection medication to identifying how gene mutation impacts kidney health. But much more needs to be done to prevent the disease through early detection and awareness.

We hope to see your support, whether at one of the walks or other community events, through donations, or just simply by being there for someone affected by kidney disease; there are so many ways to help. We can work together to eventually see a future without kidney disease.

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