I normally try to keep the blog photography-related and not personal, but today is PKD Awareness Day.
June 26, 2012, was just a normal Tuesday. I was working from home earlier that day, and in the late afternoon sent Chad a video of our 4 month old daughter Ainsley playing with a toy for the first time. He responded, and said he was just leaving work. Fifteen minutes later my phone rang from an unknown number. It was Chad, telling me he "flipped the car", and told me to come the accident site. On my way, I received another call telling me to go to the hospital instead. Naturally I was worried, but I had heard his voice so I assumed he wasn't severely injured.
Chad was hit on the passenger side of the Dodge Neon he was driving by another vehicle that ran a stop sign. The other car was traveling about 50 mph, and the impact spun the Neon and then flipped it over. Chad was able to climb out a back door himself, but lost consciousness for a short time after. At the hospital, CT scans revealed a concussion with traumatic brain injury, and then something else we weren't expecting - Chad had multiple cysts on his kidneys and liver that were hemorrhaging as a result of the impact. We were referred to a nephrologist who confirmed he has Polycystic Kidney Disease.
At the time, I knew nothing about PKD. What I've learned since then could fill a book, but here's some basic facts about the disease, from the PKD Foundation:
• Polycystic kidney disease (PKD) is one of the most common, life-threatening genetic diseases affecting
thousands in America and millions worldwide.
• In autosomal dominant PKD (ADPKD), fluid-filled cysts develop and enlarge in both kidneys, eventually leading to kidney failure.
• PKD is the fourth leading cause of kidney failure.
• More than 50 percent of people with PKD will develop kidney failure by age 50.
• Once a person has kidney failure, dialysis or a transplant are the only options to treat the damage the disease has caused.
• It is a painful disease that impacts quality of life.
• The average size of a normal kidney is a human fist. Polycystic kidneys can get much larger, some getting as large as a football, and weighing up to 30 pounds each.
• Parents have a 50 percent chance of passing the disease to each of their children. Unlike some genetic diseases, it does not skip a generation. Because it is passed from generation to generation, PKD often affects many people in one family.
• Approximately 10 percent of the people diagnosed with PKD have no family history of the disease, with PKD developing as a spontaneous (new) mutation. Once they have it, they have a 50 percent chance of passing it on to each of their children.
• PKD equally affects people of all races, genders, nationalities, geographic locations and income levels.
• There is no treatment or cure for PKD.
The PKD Foundation is the only organization in the US solely dedicated to finding treatments and a cure for PKD to improve the lives of those it affects. Since its founding in 1982, the PKD Foundation has invested more than $32 million in research, clinical and scientific meetings, making it the second largest funder of PKD research after the National Institutes of Health (NIH). This has led to new discoveries about PKD, including identifying the genes responsible for PKD, which enables researchers to investigate possible treatments.
Unfortunately, kidney research is greatly underfunded compared to the cost of care. Investing in research is crucial to improve the cost-effectiveness of kidney care and clinical outcomes of the more than 20 million Americans with kidney disease.
WALK FOR PKD
The Walk for PKD is the Foundation's signature event to raise funds and awareness. Walks take place in more than 50 cities across the nation each year, including Toledo, Ohio. The event has raised nearly $22 million since 2000. This year the Toledo Walk for PKD is taking place on September 13 at Olander Park in Sylvania, Ohio.
HOW YOU CAN HELP
• Donate to the Walk for PKD. We are not able to participate in the walk this year, but a friend of ours whose 2 year old daughter has ARPKD will be walking, so we ask that you donate to her page here.
• If you shop at Kroger, enroll your card in Community Rewards and you can support the PKD Foundation with every purchase you make! Visit https://www.kroger.com/communityrewards, sign in and search for "PKD Foundation - Toledo Chapter".
• If you're on Facebook, follow the PKD - Toledo Chapter, Toledo Walk for PKD, or the PKD Foundation page to learn more about PKD and ways you can help.