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ARPKD
 
  Autosomal Recessive Polycystic Kidney Disease, ARPKD, is a rare genetic disorder, occurring in approximately 1 in 20,000 newborns. It affects boys and girls equally and often causes significant mortality in the first month of life. If the child survives the newborn period, the chances of survival are good. For these children, approximately one-third will need dialysis or transplantation by the age of 10.
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What options or treatments are available for individuals with ADPKD?

Traditional thinking is none, keep the patient comfortable. Keeping the blood pressure under control. The two major blood chemical levels that are monitored or measured are the creatinine level and the blood urea nitrogen level (BUN) level. As these two levels rise, they are indicators of the decreasing ability of the kidneys to cleanse the body of waste products. Your doctor can get an idea how fast your renal function is deteriorating. One of the hopes is to try to make the original parts last for you, as long as possible. Hopefully reducing the chances for dialysis and/or transplantation.

Doctors use a urine test, the "creatinine clearance," to measure the level of kidney function. The patient saves urine in a special container for one full day. The waste products in the urine and in the blood are estimated by measuring the creatinine. By comparing the blood and urine level of this substance, the doctor has an accurate idea of how well the kidneys are working. This result is called the creatinine clearance. Usually, when the creatinine clearance falls to 10-12 cc/minute, the patient needs dialysis. Then the only other thing you need to be concerned with are the heart attacks and strokes that come along with all this.

Is ADPKD considered a contagious disease?

Yes



Is ADPKD also thought of as a sexually transmitted disease?

Yes, not in a usual manor.  You can not receive it from your partner, it is passed on to the children you produce. Carriers could be the father or the mother, or both... This disease does not discriminate, it treats everyone equally. It does not skip generations. Most articles state there is a 50% chance of passing it on. What I have witnessed, it is alot higher than that. I have seen three generations where all the children and all the grandchildren show positive!

Why is it that no one hears about this disease?

The position currently taken is, there is no treatment and no cure. So don't worry yourself. When the drug companies have a drug to manage ADPKD the whole world will know and hear about PKD. Odds are this, "New Drug" to manage ADPKD, will also cost more than dialysis. Then at that point early detection will be important. Currently, N.I.H. is Identifying the families, building a data base. Check Item #24 on my research page.

Then when this, "New Drug" is available to the masses the pharmaceuticals will want to start  treatment as early as possible. I have heard, 18 years of age. This opinion or model is short sided. Medical Science, has come a long way since the mid-eighties. Real soon in the next few years Tengion, and companies similar will be able to take genes from a host, grow a kidney from those genes, in a matter of weeks. Then transplant this new, neo-kidney back into the original host. Once again I encourage you to read our research page. 
ADPKD
 
Autosomal Dominant Polycystic Kidney Disease, ADPKD, causes fluid-filled cysts to grow on the kidneys. Over time, these cysts multiply and grow, causing kidney failure. Dialysis and transplantation are the only treatments for kidney failure. There is no treatment or cure for PKD.

The claims are ADPKD affects 1 in 500 newborns, children and adults regardless of sex, age, race or ethnic origin. It does not skip a generation. Parents with ADPKD have a 50 percent chance or greater of passing the disease on to each of their children. Society has done little to determine the real numbers of people affected in the U.S.A. or Worldwide.

Common symptoms of ADPKD include high blood pressure, pain in the back, side or stomach, blood in the urine, kidney stones, frequent urinary tract infections, a family history of kidney problems, heart problems (CHF) or strokes (CVA). Anyone experiencing one or more of these symptoms should see a doctor if you survive.
Frequently asked questions that I get.

What are the first, "signs" that you usually see with ADPKD?

Blood in your urine is the most common sign. The color of the blood is also important to take note of. If this happens, it is not the flu. Go to the doctor, even the emergency room. Blood in the urine could be something serious.

At what age does ADPKD usually start to interfere with your life?

ADPKD, usually shows signs on a regular basis in your mid-forties. Most people are busy with children, or their careers and don't know where to begin, little lone trying to understand what is happening to themselves.

At what age does a person with ADPKD on average go into renal failure?

53 years old is the average age adults with ADPKD go into renal failure. So, for many families they have ten years or so to get their affairs in order. This fact adds an extra element of surprise to those who suffer from ADPKD. Quality time becomes an issue. How much quality time they have and what are the best ways to spend it.

Alot of nephrologists feel that ADPKD'ers don't go into renal failure or are in need of a kidney until you are in your 60's. This is misleading, they add dialysis into the equation. When your hook up to a machine, six hours a day, every other day as you deteriorate, isn't the same quality of life that you had previous to dialysis. Dialysis was the only life sustaining option in the 20th. century. This is a new millennium, we should explore other options currently available.
ORGAN TRANSPLANTATION IS & HAS CHANGED . . . .

What do you feel is the number one issue about this disease, most are unaware of?

The discrimination is omnipresent. If you go to agencies that you believe are there to help you in times of need like Social Security, medical facilities, and such, and all the people who perform the intake have never heard of Polycystic Kidney Disease this creates a problem.

The Disability Determination Services (DDS), is the agency who determines if a person is qualified to receive SSI and SSDI for Social Security (SS), and if they are unaware of this disease or the effects of this disease and how it cripples you, it can be devastating.

PKD, is the perfect disease for the powers to be. No one has heard of it, so there is little support or understanding from the masses. If you try to be heard, you are the problem. The ones who have leverage over you can and will make life impossible, if you don't play along. 
Example, over 25% of your total body can be kidney, Social Security doesn't care. If you choose not to go on dialysis, Social Security will not provide the benefits that you are entitled to. You are captive to the medical protocol. Most people just get tired of fighting, to be heard or understood. If no one cares, then no one cares. It seems once again that we are a resource for the professionals and financial institutions to profit or harvest from.

What test do you need to learn if you have PKD?

Ultrasound, is what is used for people. If you have a cat with PKD, there is a DNA kit you can purchase through the mail for around $65 to tell you if your cat has PKD. The SAME genes are effected in both cats and people.

Someone asked me recently if PKD, was from drinking alcohol?

NO. PKD, is not something that people get stuck with due to life style choices. It is a genetic thing.
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PKD IS NOT CKD!
 
CKD, is Chronic Kidney Disease. You will see this in print everywhere. It takes the same amount of ink to print PKD as CKD and the powers to be will not do it. It is a deliberate statagy to muck up the waters and confuse the masses. This is very disturbing.  PKD is not due to lifestyle choices. CKD may be. People with Genetic issues use to have protections. NO MORE. They can't wait to through you in the mix. The Kidneys are under attack from a variety of metals that are deliberately introduced in our food, water, vaccines, and atmosphere. (air) One covers this in great depth at my Liberties Yours.com web-site. Examples off the top are Fluoride in the water, or Aluminum Dioxide in the nonexistent chemtrails or the Depleted Uranium D.U. WE are using in 26 countries including America. How about the radiation leaking from 90% of the Nuclear Reactors Globally. Do you get the picture. What happens when you put Aluminum Foil in your Microwave? Right, TSA and everyone wants to X-Ray you at the airport or in roadside car checks. Most learn they have PKD and have to wait until their renal function deteriorates down to 20%, then all this good science is suppose to happen for US. Don't hold your breath. In a majority of cases they have nothing and like it that way. There are cures for many diseases, cancers and such, but if it can't be Patented they will NEVER see the light of day. No profit. The cures will not be considered or mentioned. Doctors learn what BIG PHARMA wants them to know. It is time for a Department of CURES. Michael J. Fox is correct in this respect.  Another example WE don't have to settle for the only option or two presented. WE comtrol the Horizonal and the Verticle.
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NO ONE CARES ABOUT PKD!

This area I will demonstrate the FACT that NO ONE CARES. Honestly have you EVER hit the DONATE TAB here?                                  Yes or NO

Have you ever hit the Donate tab at the PKD Foundation?
                                                                Yes or NO

PKD is 20 TIMES more common than Muscular Dystrophy or 20 TIMES more common than Cystic Fibrosis NOW, but everyone I talk to has heard of M.D. or Cystic Fibrosis.

PKD is 50% more common than Multiple Sclerosis M.S. NOW! Once again, everyone I have talked to has heard of M.S.

I know, those pretty people that care so much for US. The guardians of truth, justice, and the American way our T.V. personalities on the NEWS have reported endlessly about this silent killing PANDEMIC. RIGHT?

I am going to use Denver as an example; you can search your own, Bailed Out NEWS Media Outlets and come up with the same results.

Channel 9 News Denver has ZERO (0) REPORTS
9 NEWS is the top viewed new channel in Denver and they
can't even spell Polycystic Kidney Disease!

Channel 6 RMPBS has ONE (1) REPORT

Channel 7 The Denver Channel had Two (2)
Paid for ads, Promoting the Annual PKD WALK

KDVR CHANNEL 31 FOX ONE (1) REPORT
This is misleading the Kids PKD is Rare 1 in 20,000 and that is the
image that the Pro's want to portray. PKD effects directly over 600,000 in
the US of A with close to 20 million Worldwide.

That 12.5 million number is over 20 years old.
That one report provided is very misleading.

Finally CW CHANNEL 2 with their ZERO (0) REPORT

Make sure you continue to attack me for bring forward the FACTS. Our MEDIA loves their props, sets, and feeling so important as they spit out there lies and untruths. It is not a mistake, night after night all the stations lead off with the same nonsense stories. Throw three (3) dogs in the dumpster and that can be milked for nights. The trained & practiced look of concern, how could this happen in our politically correct town. Meanwhile WE are throwing PEOPLE in those dumpster's nightly! Some day I want someone to explain the moral equivalent to me. Denver cares about dogs more than their own neighbors. The correct word is phonies, and or hypocrites. But they look good. Half of the networks sponsors profit from keeping the medical protocol the same. What has Rockefeller promised you?
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PKD IS FOR EVERYBODY!

EVOLUTION or REVOLUTION
EVOLVE vs. REVOLVE