Re: need prayers, etc.

I understand the weird with genetic thing. My mom was diagnosed with
Friedrich's Ataxia, and died from the complications of bedrest. Since this
was supposed to be a genetic disorder and we had no family history, we too
were puzzled. This was compounded by the fact that most of the people who
get it are in their early 20's to 30's, and she was in her mid-fifties.

Anyhow, here's a bunch of information for you to puzzle over while you
figure out how to relax. If you need help understanding some of the bigger
words, I do have a degree in biology, so I might be able to help. The big
words aren't as scary as they look.

Polycystic Kidney Diseases are inherited renal disorders characterized by
the presence of multiple cysts in both kidneys (bilateral renal cysts).
Normal kidney tissue is replaced by fluid-filled sacs or cysts of varying
sizes that become larger as the disease progresses. Findings associated with
Polycystic Kidney Diseases include abnormally high blood pressure
(hypertension) and the progressive loss of kidney function, leading to
end-stage renal failure. Symptoms may include abdominal distention,
vomiting, and/or failure to thrive. Some infants with Autosomal Recessive
Polycystic Kidney Disease (ARPKD) have unusual facial features. This occurs
when there is a severe reduction in the amount of amniotic fluid surrounding
the developing fetus (oligohydramnios), resulting in what is known as the
Potter deformation sequence.

There are two major subdivisions of Polycystic Kidney Disease (PKD):
Autosomal Recessive Polycystic Kidney Disease (ARPKD) and Autosomal Dominant
Polycystic Kidney Disease (ADPKD).

ARPKD was previously subdivided into perinatal, neonatal, infantile, and
juvenile forms. The different forms of the disease were based on the age at
onset, which frequently correlates with the rate of progression and severity
of the symptoms. This classification is archaic and is no longer valid nor
should it be used.

ADPKD typically affects adults although increasing numbers of children are
identified because of the increased use of ultrasound. ADPKD typically
progresses more slowly than ARPKD.
..

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Resources

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)428-7100
Fax: (914)997-4763
Tel: (888)663-4637
TDD: (914)997-4764
Email: Askus@xxxxxxxxxxxxxxxx
Internet: http://www.marchofdimes.com

American Kidney Fund, Inc.
6110 Executive Boulevard
Suite 1010
Rockville, MD 20852
USA
Tel: 3018813052
Fax: 3018810898
Tel: 8006388299
Email: helpline@xxxxxxxxxxxxxx
Internet: http://www.kidneyfund.org

National Kidney Foundation
30 East 33rd Street
New York, NY 10016
Tel: (212)889-2210
Fax: (212)689-9261
Tel: (800)622-9010
Email: info@xxxxxxxxxx
Internet: http://www.kidney.org

PKD Foundation
9221 Ward Parkway
Suite 400
Kansas City, MO 64114-3367
USA
Tel: 8169312600
Fax: 8169318655
Tel: 8007532873
Email: pkdcure@xxxxxxxxxxx
Internet: http://www.pkdcure.org

American Foundation for Urologic Disease
1128 North Charles Street
Baltimore, MD 21201
USA
Tel: 4104681800
Fax: 4104681808
Tel: 8002422383
Email: admin@xxxxxxxx
Internet: http://www.afud.org

Guay-Woodford, Lisa M., M.D.
Division of Nephrology
University of Alabama Medical Center
ZRB 624, 1530 Third Ave S.
Birmingham, AL 35294-0007
Tel: (205)934-7308
Fax: (205)975-5689

NIH/National Kidney and Urologic Diseases Information Clearinghouse
9000 Rockville Pike
Bldg 31 Rm 8A52A
Bethesda, MD 20852
Tel: (301)651-4415
Fax: (301)907-8906
Tel: (800)891-5390
Internet: http://www.niddk.nih.gov

International Patient Advocacy Association
800 Bellevue Way
MGM Building, Suite 400
Bellevue, WA 98004
Tel: (425)462-4037
Fax: (425)462-9532

National Hypertension Association, Inc.
324 East 30th Street
New York, NY 10016
Tel: (212)889-3557
Fax: (212)447-7032
Tel: (800)575-9355

ARPKD/CHF Alliance
PO Box 70
Kirkwood, PA 17536
USA
Tel: 7175295555
Fax: 7175295500
Email: info@xxxxxxxxx
Internet: http://www.arpkd.org

Birth Defect Research for Children, Inc.
930 Wood*** Rd
Suite 225
Orlando, FL 32803
USA
Tel: 4078950802
Fax: 4078950824
Email: staff@xxxxxxxxxxxxxxxx
Internet: http://www.birthdefects.org



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For a Complete Report

This is an abstract of a report from the National Organization for Rare
Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for
a small fee by visiting the NORD website. The complete report contains
additional information including symptoms, causes, affected population,
related disorders, standard and investigational treatments (if available),
and references from medical literature. For a full-text version of this
topic, see http://www.rarediseases.org/search/rdblist.html

The information provided in this report is not intended for diagnostic
purposes. It is provided for informational purposes only. NORD recommends
that affected individuals seek the advice or counsel of their own personal
physicians.

It is possible that the title of this topic is not the name you selected.
Please check the Synonyms listing to find the alternate name(s) and Disorder
Subdivision(s) covered by this report.

This disease entry is based upon medical information available through the
date at the end of the topic. Since NORD's resources are limited, it is not
possible to keep every entry in the Rare Disease Database completely current
and accurate. Please check with the agencies listed in the Resources section
for the most current information about this disorder.

For additional information and assistance about rare disorders, please
contact the National Organization for Rare Disorders at P.O. Box 1968,
Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org
or email orphan@xxxxxxxxxxxxxxxx


Last Updated: 2/21/2003
Copyright 1986, 1987, 1990, 1991, 1992, 1994, 1995, 1996, 1999, 2002,
2003 National Organization for Rare Disorders, Inc.

"CNY/VAstitcher" <nystitcher1972@xxxxxxxxx> wrote in message
news:c5SdnZxf8t3gOKHeRVn-tg@xxxxxxxxxxxxxxx
: DH saw the nephrologist today regarding the cysts on his kidneys. Neph.
: said he has polycycstic kidney disease. Doc told him to cut down on
: sodium, fat, cholesterol, and to stop smoking. We are really confused
: over this as nobody else has been dignosed, and it is a genetic disease.
: SO, now we have to contact his brothers so that they can get checked
: out and we have to try and contact family members to see if it really
: does run in his family.
:
: All they did was give him a low dose blood pressure med to help thin the
: blood a bit to improve kidney function....not sure what that's going to
: do....they want to see him back a neph. office in 6 months....why aren't
: they doing anything like a biopsy or something.....i'm pretty much
: working myself into exhaustion every night because it's the only way to
: not stay up forever worrying about this.
:
: Housewise, we are still living in chaos. The garage floor is poured and
: settling, but we can't put anything bakc out there until the end of next
: week, which means boxes still piled high in the dining room, bookcases
: stached in the living room, and no real workspace in the kitchen...oh
well.
:
: DH is going to try and get the insulation up in the room over the
: garage, which annoys me because i don't want him to overdo it and pull
: muscles over already hurting kidneys. Only other option is for me to do
: it, which I would gladly do if DH could handle 2 little ones for more
: than an hour at a time <sigh>.
:
: Because of new diet, I will be doing nearly everything from scratch
: soon...planning on getting into canning and whatnot. WIll also be
: buying fresh beef and poultry from local farms so as to avoid the
: preservatives and artificial colorings...argh.
:
: On the "Larisa" side...I found 133 possible categories that i can enter
: in the VA state fair next year. Trouble is that we are limited to 20,
: so it took a lot of time to whittle the list down...oh well...we plan on
: being here for several years, so maybe by the time both children are in
: school full-time, I will have entered all the different categories...lol
:
: Larisa, laughing because all I want to do is cry


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