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The correct name is Asoma Dominant Polycystic Kidney Disease, as apposed to the less common Asoma Resesive Polycystic Kidney Disease, which is found in small children.  The Asoma Dominant was added once they discovered what specific genes caused the genetic disorder.  The dominant part is the most critical, since an off spring of a parent who has the disease has a 50% chance of contracting the disease. ADPKD used to be known as Adult PKD rather than Child PKD, hence the new names. 

In ADPKD symptoms usually begin after an adult reaches 35 - 40. The onset usually presents itself as lower back pain and high blood pressure. In the early to middle stages of the disease, the high blood pressure is the most important part of the disease
to control, since it is an indication of the formation of the cysts in the kidney that as they form begin to restrict blood flow thus increasing the blood pressure. The lower back pain is due to cysts that are on the outer layers of the kidney putting pressure on the muscles. Currently, there is NO CURE. The disease progresses until the kidneys are destroyed and the patient either has a transplant or goes on dialysis. The progression of the disease to end stage renal failure can occur at any time, however, statistics indicate that the average is for an adult to experience failure between 60 - 65 years old. This
can be extended by controlling blood pressure and maintaining a healthy lifestyle. 

IThe big advantage for patients of PKD, is that for the most part until they enter into the later stages of the disease, they are in good health. Chronic back pain will be experienced and some have it a lot worse than others, but for the most part, you are in good health.  Unfortunately though, when you do reach the later stages, you can go down hill quite quickly. So until then the best thing one can do, is focus on diet, exercise and maintain a positive out look, and specifically for the PKD patient, WATCH YOUR BLOOD PRESSURE.

They have made several significant discoveries over the past 3-4 years on the disease. They know that cyst formation is due to the cells having a marker that regulates fluid flow being on the wrong side of the cell. There is a fluid regulating enzyme that looks for the marker, but since it is on the other side of the cell it can not find it, and thus fluid builds and the cysts form. The nephrons in a normal kidney are the size of a strand of  hair, however as they form cysts the nephrons will enlarge to the size of your finger and to a length of 1/2 to 1 inch in length. This is why one treatment includes diuretic, to relieve fluid pressure and blood pressure. They have recently found in mice studies that if they give them a diet that contains soy protein rather than animal protein, the cyst formation is not as rapid. They have not been able to confirm this in adults, but many PKD patients are eating a lot of tofu and soy based products. 

In terms of how it compares to the other kidney diseases, it rates either a #3 - #4, depending on which nephrologist you talk to. The most striking thing about PKD is that its occurrence is the highest among all the life threatening genetically transmitted diseases.  For example, the occurrence of PKD is 3 times greater than Cystic Fibrous, which too it a genetically inherited disease, yet Cystic Fibrous receives about 5 times the research funding.  Ask a person if they have heard of Cystic Fibrous and most will say YES; yet ask someone if they have heard of PKD, and most likely they will shake their head NO.  It is just that PKD does not capture the public awareness as some of these other diseases, and thus there is not a lot of attention paid to the disease. The costs of those who have to go on dialysis are a lot higher than research money that could be spent to find a cure for PKD. 



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Authored by Barbara Inabnit
Last Updated - April 2000

This web site is a collection of my personal experience and opinions.  Any information on this page is not intended to be a substitute for professional medical advice. You should not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition.