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Autosomal dominant polycystic kidney disease (ADPKD)

Autosomal dominant polycystic kidney disease (ADPKD) is an inherited condition that causes small fluid-filled sacs called cysts to develop in the kidneys.

Although children affected by ADPKD are born with the condition, it rarely causes any noticeable problems until the cysts grow large enough to affect the kidneys' functions.

In most cases, this does not occur until a person is between 30 and 60 years of age. 

Less commonly, children or older people may have noticeable symptoms as a result of ADPKD.

When ADPKD reaches this stage, it can cause a wide range of problems, including:

  • tummy (abdominal) pain
  • high blood pressure (hypertension)
  • blood in the urine (haematuria), which may not always be noticeable to the naked eye
  • potentially serious upper urinary tract infections (UTIs)
  • kidney stones

Kidney function will gradually deteriorate until so much is lost that kidney failure occurs.

Read more about the symptoms of ADPKD and diagnosing ADPKD.

Coronavirus advice

Get advice about coronavirus and kidney disease from Kidney Care UK

What causes ADPKD

ADPKD is caused by a genetic fault that disrupts the normal development of some of the cells in the kidneys and causes cysts to grow.

Faults in 1 of 2 different genes are known to cause ADPKD.

The affected genes are:

  • PKD1, which accounts for 85% of cases
  • PKD2, which accounts for 15% of cases

Both types of ADPKD have the same symptoms, but they tend to be more severe in PKD1.

A child has a 1 in 2 (50%) chance of developing ADPKD if one of their parents has the faulty PKD1 or PKD2 gene.

Autosomal recessive polycystic kidney disease (ARPKD) is a rarer type of kidney disease that can only be inherited if both parents carry the faulty gene. In this type problems usually start much earlier, during childhood.

Non-inherited ADPKD

In around 1 in 4 (25%) cases, a person develops ADPKD without having a known family history of the condition.

This could be because the condition was never diagnosed in a relative, or a relative with the condition may have died before their symptoms were recognised.

In around 1 in 10 cases of ADPKD, the mutation develops for the first time in the affected person. It's not known what causes this to happen.

The affected person can pass the faulty gene on to their children in the same way as someone who's inherited it from a parent.

Who's affected

ADPKD is the most common inherited condition to affect the kidneys, although it's still relatively uncommon.

Only around 1 or 2 in every 1,000 people are born with ADPKD, which means there are currently around 60,000 people in the UK with the condition.

Treating ADPKD

There's currently no cure for ADPKD, but various treatments are available to manage problems caused by the condition.

Most problems, such as high blood pressure, pain and UTIs, can be treated with medication, although you may need to have an operation to remove any large kidney stones that develop.

If the condition reaches a point where the kidneys are not able to function properly, there are 2 main treatment options:

  • dialysis, where a machine is used to replicate kidney functions
  • a kidney transplant, where a healthy kidney is removed from a living or recently deceased donor and implanted into someone with kidney failure

In some cases of ADPKD in adults, where chronic kidney disease is advanced and progressing rapidly, a medication called tolvaptan can be used to slow down the formation of cysts and protect kidney function.

Find out more about treating ADPKD

Outlook

The outlook for ADPKD is highly variable. Some people experience kidney failure soon after the condition is diagnosed, whereas others may live the rest of their life with their kidneys working relatively well.

On average, around half of people with ADPKD require treatment for kidney failure by the time they're 60.

As well as kidney failure, ADPKD can also cause a number of other potentially serious problems, such as heart attacks and strokes caused by high blood pressure, or bleeding on the brain (subarachnoid haemorrhage) caused by a bulge in the wall of a blood vessel in the brain (brain aneurysm).

Find out more about the complications of ADPKD

Information about you

If you have ADPKD, your clinical team will pass information about you on to the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS).

This helps scientists look for better ways to prevent and treat this condition. You can opt out of the register at any time.

Find out more about the register

The kidneys

The kidneys are 2 bean-shaped organs located on either side of the back of the body, just underneath the ribcage.

The main role of the kidneys is to filter out waste products from the blood and pass them out of the body in urine.

The kidneys also play an important role in:

  • helping to maintain blood pressure at a healthy level
  • keeping salt and water in balance
  • making hormones needed for the production of blood and bone

HealthUnlocked contains information from NHS Digital, licensed under the current version of the Open Government Licence

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34,131 public posts

Need information please

Hello I’m new to all this. I’m 54 yo man. No known family members have pkd. In August o 2019 I had a Ct scan that showed bi laterial parapelvic cysts and a 4 mm cortal cyst on my right kidney and a 7 mm cortal on my left. I also have hectic cyst scattered in both lobes. Kidney function is nor am gfr
Hello I’m new to all this. I’m 54 yo man. No known family members have pkd. In August o 2019 I had a Ct scan that showed bi laterial parapelvic cysts and a 4 mm cortal cyst on my right kidney and a 7 mm cortal on my left. I also have hectic cyst scattered in both lobes. Kidney function is nor am gfr
birddog923
in PKD Charity for Autosomal Dominant PKD

New to PKD

I was diagnosed with PKD in August 2020 following a CT scan after suffering weeks of fevers & unbearable headaches. I had a severe infection in my right kidney; burst abscess led to a near month long hospital stay, cyst drainage & weeks of antibiotics. It all came as a huge shock; but I’m now recovered
I was diagnosed with PKD in August 2020 following a CT scan after suffering weeks of fevers & unbearable headaches. I had a severe infection in my right kidney; burst abscess led to a near month long hospital stay, cyst drainage & weeks of antibiotics. It all came as a huge shock; but I’m now recovered
Lynx14
in PKD Charity for Autosomal Dominant PKD

Advice for mums with children that have ADPKD

Hi All, I’ve been a member here for a year, and not written anything, Not sure why I just did want to accept it I guess. I would like to know if there are any mums out there in this community that have kids with PKD? I have 4 children and 2 of my girls my youngest children have ADPKD At the time of
Hi All, I’ve been a member here for a year, and not written anything, Not sure why I just did want to accept it I guess. I would like to know if there are any mums out there in this community that have kids with PKD? I have 4 children and 2 of my girls my youngest children have ADPKD At the time of
Mummaof2pkdkids
in PKD Charity for Autosomal Dominant PKD
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PKD diagnosis + aortic dissection

Hello, My partner (33) underwent emergency surgery following an aortic dissection. The operation was very long and very complicated but, after 6 weeks in hospital, he got home and is recovering slowly. As a result of the numerous scans carried out, the doctors also discovered he has PKD. We are
Hello, My partner (33) underwent emergency surgery following an aortic dissection. The operation was very long and very complicated but, after 6 weeks in hospital, he got home and is recovering slowly. As a result of the numerous scans carried out, the doctors also discovered he has PKD. We are
evelyn000
in PKD Charity for Autosomal Dominant PKD

Tolvaptan and PLD

Hi My nephrologist is consider starting me on Tolvaptan. Has anyone heard of the the medication damaging the liver as I also have PLD as a lot of PKD patients sometimes have. Dont really want to start on this as my GFR is 52... I’m working hard on getting it higher in 2020. Many Thanks Andrea Beesley
Hi My nephrologist is consider starting me on Tolvaptan. Has anyone heard of the the medication damaging the liver as I also have PLD as a lot of PKD patients sometimes have. Dont really want to start on this as my GFR is 52... I’m working hard on getting it higher in 2020. Many Thanks Andrea Beesley
tillymint16
in PKD Charity for Autosomal Dominant PKD

Any one know ......

Hi due to have my pneumonia vacination next week it's been 8 years since my last vaccination back in 2013 and they only gave me the adult one pneumovax 23 ( pnn23) then I phoned up my GPs to book this and Spoke to the practice nurse explained it's been 8 years since my last one and I wanted the
Hi due to have my pneumonia vacination next week it's been 8 years since my last vaccination back in 2013 and they only gave me the adult one pneumovax 23 ( pnn23) then I phoned up my GPs to book this and Spoke to the practice nurse explained it's been 8 years since my last one and I wanted the
stewie
in CLL Support

Heavy legs and Parkinson’s High Every body

This is Cinderella63 I have not been to visit for quite a time I can’t really explain the reason why I havnt been if I spoke the truth it’s because I’ve had quite a long spell of depression but I do believe I am coming out of it and I want to visit more often I mentioned heavy legs that is the
This is Cinderella63 I have not been to visit for quite a time I can’t really explain the reason why I havnt been if I spoke the truth it’s because I’ve had quite a long spell of depression but I do believe I am coming out of it and I want to visit more often I mentioned heavy legs that is the
Cinderella63
in Restless Legs Syndrome

LSD acid on Dialysis

My teen is ESRD and has been for two years. He has also struggled with Leukemia, and anxiety/depression. He has a friend that's telling him to use LSD! He's been doing research online and he's convinced he wants to try it... I'm worried sick. I've seen online that acid is metabolized in the liver, so
My teen is ESRD and has been for two years. He has also struggled with Leukemia, and anxiety/depression. He has a friend that's telling him to use LSD! He's been doing research online and he's convinced he wants to try it... I'm worried sick. I've seen online that acid is metabolized in the liver, so
Firefingers
in Kidney Dialysis

Are my nails Terry nails?

Hello guys, am wondering if my nails are terry nails, as after a i saw them and Googled it I had full liver blood test, diabetes, kidney test came back normal ferritin also normal please advise
Hello guys, am wondering if my nails are terry nails, as after a i saw them and Googled it I had full liver blood test, diabetes, kidney test came back normal ferritin also normal please advise
Hum1991
in British Liver Trust

Is there something we can do?

I feel that this forum mostly consists of people acknowledging each other’s struggles but more often than not without any real answers or solutions (because we just don’t have them) and in a similar way to how reddit got together to change Wall Street with investments, or BLM protested and got the worlds
I feel that this forum mostly consists of people acknowledging each other’s struggles but more often than not without any real answers or solutions (because we just don’t have them) and in a similar way to how reddit got together to change Wall Street with investments, or BLM protested and got the worlds
Beech33
in Endometriosis UK

lifetime of hard work

Hello, My name is Richard. I've worked in a plastic factory with toxic chemicals and breathed toxic welding fumes for 30 years until my lower back discs were worn out and my prostate became enlarge. Doctors useless treatments for the prostate lead to my kidneys going bad. I been on dialysis for 3
Hello, My name is Richard. I've worked in a plastic factory with toxic chemicals and breathed toxic welding fumes for 30 years until my lower back discs were worn out and my prostate became enlarge. Doctors useless treatments for the prostate lead to my kidneys going bad. I been on dialysis for 3
RichardOtt
in Kidney Dialysis

blood results in for RLS

iron test- ferritin; 53.8ug/l normal= 30-400ug/l TIBC: 57.77umol/l normal= 45-72umol/l UIBC: 33.3umol/l normal= 22.3-61.7 umol/l transferrin saturation: 42.36% normal 20-50 % iron: 24.47umol/l normal 5.8- 34.5umol/l folate serum: 8.32ug/l normal 3.89-19.45ug/l vitamin b12- active
iron test- ferritin; 53.8ug/l normal= 30-400ug/l TIBC: 57.77umol/l normal= 45-72umol/l UIBC: 33.3umol/l normal= 22.3-61.7 umol/l transferrin saturation: 42.36% normal 20-50 % iron: 24.47umol/l normal 5.8- 34.5umol/l folate serum: 8.32ug/l normal 3.89-19.45ug/l vitamin b12- active
ge7521
in Restless Legs Syndrome

Scans and endo

Hi girls I've been a bit quiet on here but im looking for advice as I'm on the edge of my teether now. I was diagnosed with endometriosis in 2019 and had to been ok since had my bad days and good days. Last year things got bad again, ive been super bloated since December and I cant get anything to get
Hi girls I've been a bit quiet on here but im looking for advice as I'm on the edge of my teether now. I was diagnosed with endometriosis in 2019 and had to been ok since had my bad days and good days. Last year things got bad again, ive been super bloated since December and I cant get anything to get
Xxlouise25xx
in Endometriosis UK

Existing heart failure drug may treat potential COVID-19 long-hauler symptom.

In a new study out of University of California San Diego School of Medicine, researchers found a drug used for heart failure improves symptoms associated with postural orthostatic tachycardia syndrome, otherwise known as POTS. This complex, debilitating disorder affects the body’s autonomic nervous system
In a new study out of University of California San Diego School of Medicine, researchers found a drug used for heart failure improves symptoms associated with postural orthostatic tachycardia syndrome, otherwise known as POTS. This complex, debilitating disorder affects the body’s autonomic nervous system
2greys
in British Lung Foundation

AKI

Hello Wondered if anyone on here has suffered Acute Kidney Injury and recovered well? Private message me if preferred please . Thank you. Edit: I have put another post on here. Thank you.
Hello Wondered if anyone on here has suffered Acute Kidney Injury and recovered well? Private message me if preferred please . Thank you. Edit: I have put another post on here. Thank you.
Mary-intussuception
in Early CKD Support

22month old daughter holding her poop

Hello all, newly joined as a pediatrician we visit recommended we have a look. In short, my daughter chronically holds her poo, especially when it gets harder. She is 22months old and we've been dealing with this since she had a scary/painful poo around 6months. Currently treating with picosulphate
Hello all, newly joined as a pediatrician we visit recommended we have a look. In short, my daughter chronically holds her poo, especially when it gets harder. She is 22months old and we've been dealing with this since she had a scary/painful poo around 6months. Currently treating with picosulphate
shicky4
in ERIC

phosphorous ?

I have been diagnosed stage 2 CKD : potassium and sodium fine, but phosphorous raised, so my GP sent me for a liver scan , which the radiographer said he could see nothing on it to be worried about, but I am wondering why my doctor sent me for a liver scan and not a kidney one ? I haven't been
I have been diagnosed stage 2 CKD : potassium and sodium fine, but phosphorous raised, so my GP sent me for a liver scan , which the radiographer said he could see nothing on it to be worried about, but I am wondering why my doctor sent me for a liver scan and not a kidney one ? I haven't been
barneyfrances
in Early CKD Support

Imbruvica Good News

Diagnosed with B-PLL (CLL) around Feb 2020...just before Co-Vid. Was on W+W until Dec 2020. WBC went from initial 99K to 357 K and hematologist said it's time to start medication. On Imbruvica 420mg @ 1X day for 2 months now. WBC went from 339K in Jan 2021 to 220K in Feb 2021. No side effects other
Diagnosed with B-PLL (CLL) around Feb 2020...just before Co-Vid. Was on W+W until Dec 2020. WBC went from initial 99K to 357 K and hematologist said it's time to start medication. On Imbruvica 420mg @ 1X day for 2 months now. WBC went from 339K in Jan 2021 to 220K in Feb 2021. No side effects other
Phyllis731
in CLL Support

Bilateral Salpingo-Oophorectomy

Hi, just wondering if any of you lovely ladies have had a Bilateral Salpingo-Oophorectomy? I’ve got endo, had cysts removed laparoscopically in 2012, all fine after that until recently when I’ve started to experience quite bad pain. An ultrasound has revealed a large cyst on one of my ovaries. Consultant
Hi, just wondering if any of you lovely ladies have had a Bilateral Salpingo-Oophorectomy? I’ve got endo, had cysts removed laparoscopically in 2012, all fine after that until recently when I’ve started to experience quite bad pain. An ultrasound has revealed a large cyst on one of my ovaries. Consultant
Sassy123455
in Endometriosis UK

Creatinine

So my creatinine has jumped up and GFR dropped like 40 points. So I took two blood tests, kidney is not in rejection. I haven’t gotten the results of the second test but it’s to see if the transplant kidney is producing it’s own antibodies. I have had some serious UTI’s which I’m sure is one of the
So my creatinine has jumped up and GFR dropped like 40 points. So I took two blood tests, kidney is not in rejection. I haven’t gotten the results of the second test but it’s to see if the transplant kidney is producing it’s own antibodies. I have had some serious UTI’s which I’m sure is one of the
Dara3351
in Kidney Transplant Patient Support
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