Honoring My Father on PKD Awareness Day

By Jim Meyers, DPC Patient Ambassador
September 4, 2014
 

I will never forget the first time I heard the term, “PKD.”  I was talking to my Father about a recent visit to his doctor.  He told me there was something wrong with his kidneys and he “would probably not live to be a hundred.”  He had been diagnosed with polycystic kidney disease.  5 years later, he passed.  2 years later, I was diagnosed.  I am now 60 years of age, 5 years younger that my Dad when he died.  Like him, I am on dialysis.  I am waiting for a kidney transplant, like 105,000+ others.  On today September 4, 2014, I honor my Dad by remember PKD Awareness Day.

I have been lucky, I was diagnosed at the age of 25.  I saw a nephrologist every 6 months, took my blood pressure meds, tried to stick to a kidney diet.  I managed to put dialysis off until age 58, but finally I had no choice.

According to the PKD Foundation:

·      PKD is the most common of all life-threatening genetic diseases affecting 600,000 Americans and 12.5 million children and adults world-wide;

·      It is the 4th (thus Sept 4th as PKD Awareness Day) leading cause of kidney failure. More than 50% of the people with PKD will develop kidney failure by the age of 50

·      PKD causes fluid-filled cysts to grow in kidneys, eventually leading to kidney failure

·      The number of people who have PKD is greater than the combined number of people who have cystic fibrosis, muscular dystrophy, hemophilia, sickle cell anemia, Down’s Syndrome and Huntington’s Disease;

·      PKD  is twice as common as multiple sclerosis and 20 more common than cystic fibrosis;

·      Common PKD symptoms include: high blood pressure, constant or intermittent pain in the back, side or stomach, blood in urine, kidney stones, frequent urinary tract infections, a family history of kidney problems, heart problems or strokes;

·      PKD comes in 2 hereditary forms: autosomal dominant (ADPKD), the most common form of all life-threatening generic diseases or autosomal recessive (ARKPD), that occurs in children and although is a rare form of the disease that causes significant mortality in the first month of life. (I lost my cousin Rich at the age of 32 to this form of the disease);

·      ARPDK affects 1 in 20,000 children.  For ARPDK children that survive the newborn period (about 70%) about 1/3 will need dialysis or transplantation by the age of 10.  However, children with this form of PDK have an improved chance to survive their 10th birthday as that percentage has improved from 50% to 85% today;

·      Parents have a 50% chance of passing the disease to each of their children.  Unlike other genetic disease, it does not skip a generation.  Because it is passed from generation to generation, PKD often affects many people in one family;

·      About 10% of the people with PKD have no family history of the disease have no family history of PKD.  This is a spontaneous or new mutation.

·      It is estimated that one in 500 people have the dominant form of PKD (ADPDK), though the Foundation feels the number is likely higher.  Many people who have the disease choose to remain undiagnosed due to concerns about losing health/life insurance and being discriminated against on their job, losing job opportunities or promotions;

·      The disease is an equal opportunity inflictor, effecting men and woman regardless of age, race, or ethnic origin;

·      People with PKD develop cysts on both kidneys that can be as small as a grape head to as large as grapefruit. A normal kidney is the size of a clenched fist; polycystic kidney can weigh as much as 38 pounds and grow to the size of a football; sometimes larger.

·      There is no cure for PKD, leaving those of us with kidney failure due to PKD with the choice of dialysis, transplantation or death.  Neither dialysis nor a transplant will cure PKD.

·      PKD costs the federal government in excess of $2 billion annually through Medicare and Medicaid costs for dialysis, transportation and related treatments.  The National Institute of Health (NIH) only devotes $21 M for PKD research. We are low on pole compared to other diseases, http://report.nih.gov/categorical_spending.aspx

·      The PKD Foundation since its founding in 1982 has invested more than 31 million in research, clinical and scientific grants, and scientific meetings;

·      The Foundation provides in-depth resources and education about living with PKD.  They are the 2nd largest funder of the NIH and their webinars, videos, website, and local chapters provide inspiration for people like me that suffer from PKD;

·      The Foundation provides advocacy to support legislation for PKD initiated legislation for national, state and local initiatives.  United on the Hill meets with members of Congress to raise awareness for PKD and PKD legislative priorities;

·      The Foundation supports of 60 local Chapters across the country who are supported by volunteers

·      The Foundation raises awareness through marketing and public relations so people know what PDK is, the Foundation’s Services and how to donate.  They publish a PDK progress magazine and a PDK monthly newsletter.  You can email pdkcure@pdkcure.org to learn how to receive these.  They sponsor local walks for PDK in over 50 cities across the nation each year.  These events have raised more than $20M since 2000.  79 cents of every dollar raised goes directly to programs.

 

I honor my Father today, because of advocacy that has been done by many of us that have PKD have given us a brighter outlook towards the future and a genuine belief that although there remains no cure for PKD, there is hope.  If I could speak to my Dad today, I would tell him that there is hope for his son.  That his grandson, my son is not afflicted.  That his great-grandchildren may never have to face the choices he and I had to make.  Please give generously to the PKD Foundation.  Here is a link to their website and their donation page: https://www.pkdcure.org/donate.

Please get tested for kidney disease.  It is a simple urinalysis and blood test.  It save me from a very hard life.  It can save you too.  The National Kidney Foundation represents that 26 Million Americans have kidney disease and in the future 1 in 3 will develop it.

On the 4th of September, I honor my Father.  As an advocate, will you join us?  Donate to the Foundation.  Get tested.  #PKDAwarenessDay #EndPKD.

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