Melanie's PKD Page
This page is all about PKD (Polycystic Kidney Disease). Even though very few people have heard of it, Polycystic Kidney Disease affects 600,000 people in the U.S. alone, and 12.5 million world wide. There are more people with PKD than cystic fibrosis, muscular dystrophy, hemophilia, Downs syndrome and sickle cell anemia combined. Many PKD patients find it useful to have access to the same information as their doctors because many doctors are unfortunately pretty unfamiliar with the disease.
I will try to bring you as much information and sources about the disease as possible. If you have any questions about PKD for any reason, or if you know of anyone who has the disease and is looking for more information or for support groups I encourage you to contact any of the sources I have listed here, or to
ask me a question. I would also appreciate an email if you have any pertinent information I should add to this page. PKD has been a profound part of my life so far, and will only continue to become more so. Likewise, the information on this page is just the beginning, and will continue to grow as time and research allows. If there is just one person out there that this page might help, I will be grateful for having the opportunity to make a difference.
PKD Resources
My personal experience with PKD
How to help
One woman and her dog are traveling across the country by car to raise awareness of PKD and money to help find a cure. You can use the online pledge form to help.
Zeal.com donates money to various charities when people sign up with them. I recently had the PKR Foundation added to their list of charities. Sign up and pick the PKR Foundation as your favorite charity to help with the contributions.
The National Kidney Foundation (which is involved with all kidney diseases) will also accept donations in the following manners: You may donate online by completing an online form. This form is protected by 128-bit SSL secure encryption. You may also send a tax-deductible donation via mail or fax to:
National Kidney Foundation
30 East 33rd St., Suite 1100
New York, NY 10016
Phone: (800) 622-9010
(212) 889-2210
Fax: (212) 689-9261
PKD Resources
The PKD Foundation is working to increase funding for research, provides extensive information about PKD, and offers "Friends Groups" in different areas of the country.
The National Kidney Foundation deals with any type of kidney diseases and conditions.
The Polycystic Kidney Disease Information Page is a wonderful resource for PKD patients. There are links to all kinds of PKD related pages, including a PKD support group. Sign and view the guestbook to meet others with PKD who want to share.
The American Journal of Kidney Diseases, as the name implies, covers all sorts of kidney diseases, but is still a good source for PKD information. It is a publication of the National Kidney Foundation.
PKD Chat & Community is a community page with message boards and schedule chats for PKD patients. It also has links to other PKD sites, and recent PKD related articles.
Lynchburg Nephrology Inc. is located in Virginia, but their web site has some information that would be valuable to kidney patients anywhere.
Hypertension, Dialysis and Clinical Nephrology is aimed at the medical professional and not specifically for PKD. They currently have a couple of the keynote speeches, from the PKRF conference in Arizona this year, available to listen to. You must register with the site to access any of their information, but registration is open to anyone and won't cost you anything.
The Journal of the American Society of Nephrology is available to be read on the world wide web by anyone. The American Society of Nephrology has a complete web site of which the journal is just a portion, however I did not list it on this page since membership in the Society and access to the bulk of their web site is restricted to medical professionals (both active and retired) and medical students.
PR Newswire is a news service which covers all types of news stories. You can search their database within given categories (in this case, Health/Biotech) for articles released up to 30 days ago. The reason I list them here is that they recently released this article dealing with PKD:
KANSAS CITY, Mo., Oct. 4 /PRNewswire/ -- Until recently, a person
diagnosed with polycystic kidney disease (PKD) had little hope of a cure.
Today, research discoveries provide important keys to the underlying
mechanisms of PKD, which should speed work toward a treatment for the
12.5 million sufferers worldwide. PKD is the world's most common
life-threatening genetic disease. It is more common than cystic fibrosis,
sickle cell anemia, hemophilia, muscular dystrophy, and Down's syndrome
combined.
PKD causes balloon-type cysts to form on the kidneys, interfering with
function and frequently culminating in end-stage renal disease (ESRD),
requiring either dialysis or a kidney transplant to sustain life. The annual
cost to the federal government of PKD-associated treatment, including dialysis
and kidney transplants in the U.S. is estimated at $1.5 billion.
Three significant articles published in the September 23 issue of NATURE
provide new insights on mechanisms responsible for polycystic kidney disease:
-- Researchers at the Howard Hughes Medical Institute at the California
Institute of Technology in Pasadena, have linked the LOV-1 gene, a gene
responsible for aberrant male mating behavior in the tiny roundworm, to
the PKD1 gene associated with 85% of PKD cases. Such a discovery will
make it possible to investigate similar mechanisms in the easily
studied worm.
-- Researchers from Harvard Medical School report results of a frog system
study demonstrating that a PKD2-like human protein can function as an
ion channel associated with the abnormal fluid secretion and cellular
proliferation, which are the hallmarks of PKD. Understanding the
channel properties should provide new therapeutic strategies for PKD.
-- In a commentary accompanying the two PKD articles in NATURE,
researchers from the Yale University School of Medicine and Albert
Einstein College of Medicine say that the two reports lend strong
support to the developing hypothesis that PKD1-related proteins act as
receptors, which regulate the activity of ion channels containing the
PKD2-related proteins. Further research may show which specific
signals activate the mechanism that causes PKD and may lead to
understanding the pathology underlying this disease.
The simultaneous publication of two major papers and one commentary on PKD
in NATURE highlight both the increasing breadth and dizzying pace of
research progress on PKD.
For more information, contact the Polycystic Kidney Research Foundation:
800-PKD-CURE; or visit their web site: http://www.PKDcure.org.
SOURCE Polycystic Kidney Research Foundation
Web Site: http://www.PKDcure.org
My personal experience with PKD
While many people never know that their family has a history of PKD until after they themselves are diagnosed, that has not been my experience. My mother started having kidney failure while I was in my pre-teens. Much of my late childhood was spent visiting her in the hospital or at the dialysis center. It was at this point that I found out that my grandfather had had it. He died before my parents met.
When I was sixteen, I had an ultrasound run for possible gall stones. They found cysts on my kidneys at that time. Since my diagnosis I have passed several kidney stones and had one infection. I also have high blood pressure, which is very common among PKD patients (more PKD patients actually die from heart attack, stroke or aneurysms than kidney failure). I haven't had any other problems with my kidneys yet.
My mother passed away in August of 1993 from an infection in her stomach which was caused by a leak in her peritoneal dialysis graft. My father (who did not have PKD) passed away in July of 1998 of a heart attack. While going through some of the stuff in my parents' house after my father died, I found some pictures of people I was not familiar with. I showed them to my grandmother to find out who they were. One of the pictures showed two of my great aunts with their mother. It was at this time that I found out that this great grandmother had had PKD.
In February 1999, my uncle died from the same type of infection that had killed my mother. Needless to say, this affected me quite deeply, not only because my family had gotten so very small over the past few years but also because I am approaching the age where both my mother and uncle first started having serious kidney problems. For the first time in my life I was completely aware of my disease and what might happen. I was completely depressed. I did have the frame of mind however to do a little looking around. It was at this time that I found the PKD Foundation and became a member of it not only nationally, but also of the local San Diego friends group. Since then I have learned quite a bit. It is always interesting to me that most people I have spoken to were never aware of the disease in their family at all, and those that were can not trace it back more than one generation.
The following information is an update on what has happened since I originally wrote the history above in September of 1999. It is now February of 2001. I have still had no serious problems with my kidneys. I have always tried to eat as healthy as possible, but after finding gravel in my urine a few weeks ago, I have decided to completely give up red meat and to limit my fish and foul consumption to one or two servings per week. I have also started going to a gym. I live in hope that these measures will help in some way.
Unfortunately, more than a year ago the local friends group here in San Diego disintergrated. The president of the group was having many health problems. Representatives from the PKD Foundation came down to San Diego to try to get the group going again, but nothing more has been heard from them as far as I know. This is of course very distressing. I would be willing to help start a PKD group out here, even if it is not associated with the PKD Foundation, but don't know where to start. If there is anyone out there reading this who happens to live in the San Diego area and wants to join or help start a PKD group, please email me.
This page has been visited 
times since September 9, 1999.
