maybe

24%

age 71/maje

no

no

Montana USA

I see a kidney specialest now.

Yes :(

enlarging

28/F

not yet

not yet

Indiana, United States

PKD runs in my family. My uncle died of it with an aneurysm. My other uncle just had a transplant after dialysis for 5 years. My aunt is currently on dialysis and awaiting a kidney. I found out I had it when I was in my early 20s. Am i scared hell yes. Ive seen loved ones go through it and I dread it. I pray someone somewhere can find a cure.....

yes

good

41

no

no

Faribault,MN

I found out 15 years ago I had PKD when I was in the process of donating a kindey to my mother. My mother had a transplant 16 years ago. It is hereditary as my maternal grandfather had PKD as well,he was on dialysis for many years. I would be interested in a good diet plan to follow or recipes for PKD diet.

Yes

42/female

Yes

PA

I was diagnosed with PKD when I was 26. Neither of my parents were known to have it (although they were not genetically tested) and none of my 4 siblings do. I had a transplant in 2000. I am fortunate because my Aunt was the donor, and I never had to go on dialysis. I went back to work within several weeks of my transplant, as did my Aunt. I have routine check ups and take my meds, but have lead a very normal life since the operation.

yes

stage 3 renal failure

26

no

no

Missouri

I have known about my PKD for about 4 years; My father died Oct. 2007 from an aortic dissection which was a complication of PKD, he was only 57 and has lived the longest; My Aunt found out today she is in stage 4 renal failure and only has 23% function; at 20%, she will be put on a transplant list; I would like to reach out to some people with PKD like us because it has really damaged our lives

yes

full

38/female

no

no

Cleve. Ohio

I've had PKD since the age 29. It's hereditary on my father's side. he has PKD, and has had an kidney and heart transplant as an result of the diease. His mom passed away from PKD at age 38. I'm the only sibling of four that has PKD. Although i'm extremely afraid of whats to come(especially with no cure) I'm truly blessed that given the strong family history of kidney failure at relitively young ages, so far I have full kidney function. I know eventually i like so many others will begin my own journey w/ the more aggressive stages of PKD; I will continue praying for an cure and being greatful for my loving and caring family and friends!!!![:)s

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I Dont No Yet

?

12 Female

No

No

London

Hello...I'm Just Here to Say That My Father had a transplant and he is active and happy now. My Brother who is 15 was diagnosed with kidney disease.

yes

full

45, female

no

no

ansonia , ohio ,usa

As far as i know im the only one that has it in are family history

Have not been tested yet / All of my family members have it (5 Generations)

20 / Female

no

no

Ohio

I am just looking for others to talk to that have this disease, So far I have not been tested due to the pre-existing condition clause with my insurance company ( they wont cover me if I have it ) so I am unsure if I have it but everyone in my family does so far, I am yet to show symptoms so that is one positive outlook. My mother who is 43 has 58% kidney function left and her kidney's have gotten so big that her stomach looks like she is permanently 9 months pregnant due to this disease, I was wondering if other had this side effect. We think its due to the fact she has had 4 children and the rest of our family members have not had more than 2 children and their kidneys are not so enlarged. We are still very optimistic about a cure and hope there will be one soon!! I would love to talk to others affected by PKD !

USA

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YES

STAGE 3

55/MALE

NO

NO

NAPLES, FLORIDA

JUST LOOKING FOR AS MUCH INFO AS POSSABLE. ARE YOU ABLE TO WORK ETC

no

kidney stones

27

no

no

Nashville

Thanks

yes

29%

57/F

no

no

Missouri

i was diagnosed with PKD at 28. I'e been able to keep it from radically impacting my life however it has been the source of a great deal of chronic pain. I recently went through a cyst decortication on my right kidney after they sucessfully did my left kidney 10 years ago. It isn't for everyone, but if your cysts/kidneys are exceptionally large (from rib cage to pelvis) this has been a great help to me to reduce the size and gain much needed mobility. My blood pressure has decreased and function been unaffected from the surgery. This is more invasive than cyst aspiration but the results are longer lasting. I'm two weeks post surgery and feel a a major difference.

Yes

35%

48/Male

No

No

Georgia

I was diagnosed in 1995 for APKD. I recently lost a sister to complications of this disease. Out of 10 kids, I'm the 2nd to have it. My mom sister had this disease as well. Just keep praying for a cure. I hope soon!!

I have questions, because my six-year-old son has symptoms

Don't know

Nothing even diagnosed yet

Canada

Can anyone tell me the usual first signs and at what age it starts - although from other postings, it seem like it can start at any age... I'm just looking for information, because I notice my son has excessive thirst, and when I put that information and his age into a search engine, polycystic kidney disease immediately popped up. Thanks a lot!

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yes

dont know

26

no

no

irvine ayrshire scotland

hello people ive had pkd since i was born most people r right there is not much information to go on regarding this disease. nobody in my family had any kind of kidney disease but unfortunatley i have but life goes on. the best thing i can suggest is to keep urself busy it has never held me back but at my age when u meet new people or start a new job how do u go about telling people that u have a disease.when i was at school i told people and i just got made fun of so from then on i decided to keep it to my self only a select few friends know about it.basically i dont want people feeling sorry for me .i would just like to wish everyone good luck for there ongoing battle

yes

47%

49/female

no

no

Carluke, Scotland

I have PKD, also 2 of my 3 sons, and my oldest son's 3 year old daughter. His new baby daughter will be screened at 12 months to find out if she also has it. My mother died in 1969 aged 37 from a brain aneurysm due to PKD.Keep smiling, no point getting too disheartened about it.

yes

70%

58-male

no

dont want one

texas

watch your blood pressure..low salt and pottasum diets help me..keep a good attude..best of luck