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MY CAUSE
MADALAINE'S MISSION - A CURE FOR PKD....
In April of 2008, I faced a mother's worst nightmare... Madalaine, my youngest daughter, was diagnosed with early onset ADPKD just days before her fifth birthday. Autosomal Dominant Polycystic Kidney Disease (ADPKD) is a life-threatening genetic disease, affecting 600,000 Americans and 12.5 million people, worldwide. ADPKD affects 1 in 500 newborns, children and adults regardless of sex, age, race or ethnic origin. It does not skip a generation. There are currently no treatment, no meds or cure for PKD.
ADPKD causes fluid-filled cysts to grow on the kidneys. The cysts can spread to the liver, pancreas, spleen, ovaries, large bowel, membranes that surround your brain, the central nervous system, and seminal vesicles. It can also affect the heart, causing high blood pressure among other complications such as intracranial aneurysms and mitral valve prolapse. Over time, these cysts multiply and grow damaging the kidneys, reducing kidney function and leading to kidney failure. Dialysis and/or kidney transplantation are the only treatments for kidney (renal) failure.
Left:PKD Kidney, Right:Healthy Kidney The cysts grow out of nephrons, the tiny filtering units inside the kidneys. The cysts eventually separate from the nephrons and continue to enlarge. The kidneys enlarge along with the cysts-which can number in the thousands-while roughly retaining their kidney shape. In fully developed autosomal dominant PKD, a cyst-filled kidney can weigh as much as 20 to 30 pounds
Healthy kidneys clean the blood by filtering out extra water and wastes. They also make hormones that keep the bones strong and blood healthy. When both kidneys fail, the body holds fluid, blood pressure rises, harmful acidic wastes build up inthe body and the body ceases to manufacture enough red blood cells.
Polycystic kidney disease causes the kidneys to gradually lose their ability to eliminate wastes from the blood and maintain the body's balance of fluids and chemicals. As the cysts enlarge, they produce pressure and promote scarring in the normal, unaffected areas of the kidneys. These effects promote high blood pressure and interfere with the ability of your kidneys to keep wastes from building to toxic levels, a condition called uremia.As the disease worsens, end-stage kidney (renal) failure may result. When end-stage renal failure occurs, ongoing kidney dialysis or a transplant is required to prolong life.
Needless to say this news is devastating. So, after the initial shock, tears and feeling of hopelessness has settled, I am recollecting my inner strength and courage to diligently strive to gain the knowledge necessary to fight for the life of my daughter and the other 12.5 million children and adults afflicted with this incurable disease.
At the tender age of five Madalaine has already lost 25% kidney function with just a small cluster of cysts in both kidneys. If the progression of this disease continues at this ratio, it is estimated that Madalaine will require dialysis and/or a transplant by age 20.
The key to Madalaine's survival is to slow the rate of kidney damage in an effort to preserve the remainder of her kidney function until a cure or medicines can be developed.
First on our agenda is working closely with Madalaine's team of doctors to learn how to slow down the progression through the only line of defense available, a restrictive low sodium diet. In addition to creating and monitoring her daily dietary intake, I must also monitor her blood pressure, adjust our lifestyle to accommodate Madalaine's current/future health and medical needs as well as educated everyone in our lives including her schools.
Second is to help other PKD families by promoting public awareness, patient/family education and support.
Third is encouraging contributions and advocacy to fund research, clinical trials and patient support.
Madalaine is an amazing child with incredible courage and always a smile on her tiny face. She is my inspiration to continually maintain a positive attitude of living a fulfilling life, in lieu of my disabling disease of RA and her incurable disease of PKD, we will find a way to overcome the obstacles we encounter because we are survivors.
So, I ask you to join in my stewardship and advocacy on behalf of my daughter, Madalaine and all PKD children on our mission to find a cure, so no child has to live a life on dialysis or face the trials of a transplant.
MADALAINE'S MISSION TEAM FOR THE 2008 VIRTUAL WALK FOR A CURE...
Please Join Today: Madalaine's Mission Team for the 2008 PKD Virtual Walk For A Cure on October 18th.
This virtual walk is perfect for those who can't physically walk, don't have time to walk or don't have a sponsored walk in their area. Your participation is deeply appreciated!
HOW YOUR ADVOCACY CAN HELP...
PKD patients and families face many challenges including limited or no coverage for the cost of genetic testing, pediatric blood pressure monitor, restrictive dietary needs, medical alert bracelets, psychological therapy, patient support services and more...
...So please take time learn more about Polycystic Kidney Disease by visiting the PKD Foundation website....
...And Get Involved Today! Your stewardship & advocacy can make all the difference!
Thank you for your support.
~ Charlene (Madalaine's Mom), Zarya Studios of New Orleans
2008 Walk for PKD
September 20 and 21
March 2-3, 2009,
in Washington, D.C.
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