Polycystic kidney disease awareness
Informed by recognized medical guidance
Overview
Polycystic kidney disease (PKD) is a genetic condition where fluid-filled sacs called cysts grow in the kidneys. These cysts can enlarge the kidneys and damage their ability to filter waste from the blood over time.
Key facts
- PKD is an inherited condition, meaning it runs in families.
- It affects both kidneys and can lead to kidney failure later in life.
- There is no cure, but treatments can manage symptoms and slow the disease.
PKD is considered a rare disease, affecting about 1 in every 1,000 people worldwide.
PKD usually appears in adults between the ages of 30 and 50, but it can also affect children (infantile form) and older adults. It affects both men and women equally.
Symptoms
- Sudden, severe pain in your back or side that doesn't go away
- Fever or chills along with kidney pain (may be a sign of infection)
- Blood in your urine that is heavy or bright red
- Shortness of breath or chest pain
- Confusion or feeling very weak
- ⚠Pain that gets worse over time or does not improve with rest
- ⚠Signs of a urinary tract infection, such as burning when urinating, frequent urination, or cloudy urine
- ⚠New or worsening high blood pressure
Common symptoms
- High blood pressure (hypertension)
- Pain in the back or side
- Blood in the urine (hematuria)
- Frequent urinary tract infections (UTIs)
- Kidney stones
- A feeling of fullness or swelling in the belly
Symptoms in children
- In children, PKD may cause high blood pressure, enlarged kidneys, and sometimes kidney failure early in life. Many children have no symptoms at first.
Symptoms in older adults
- Older adults may experience worsening symptoms, including more pain, frequent infections, and signs of kidney failure such as swelling in the legs, tiredness, nausea, and trouble concentrating.
Causes
Main causes
- Polycystic kidney disease is caused by a change (mutation) in one of two genes: PKD1 or PKD2. These genes are passed from parent to child.
Risk factors
- Having a parent or sibling with PKD increases your chance of getting it.
- The type of gene mutation (PKD1 tends to cause more severe disease than PKD2).
When to see a doctor
See a doctor urgently if:
- If you have sudden severe pain in your back or side, fever, or see blood in your urine, see a doctor right away or go to the emergency room.
Book a routine appointment if:
- If you have a family history of PKD, even without symptoms, talk to your doctor about screening.
- If you notice high blood pressure, frequent UTIs, or kidney stones, make an appointment.
Diagnosis
PKD is typically diagnosed using imaging tests that look at the kidneys. Your doctor will also ask about your family history.
Tests that may be done
- Ultrasound of the kidneys (most common and painless)
- CT scan or MRI for more detailed images
- Genetic testing to confirm the gene mutation
- Blood and urine tests to check kidney function
What to expect at your appointment
The doctor will usually start with an ultrasound. If cysts are found, they may order additional tests. You may also be referred to a kidney specialist (nephrologist).
Treatment
There is no cure for PKD, but treatment focuses on managing symptoms, slowing kidney damage, and preparing for possible kidney failure.
Self-care at home
- Drink plenty of water to stay hydrated and help flush the kidneys.
- Eat a low-salt diet to help control blood pressure.
- Avoid non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen, as they can harm the kidneys.
- Stop smoking and limit alcohol intake.
- Monitor your blood pressure regularly.
Medical treatments
Treatment may include medications to control high blood pressure, pain relief for cyst pain, and antibiotics for infections. In advanced stages, dialysis or a kidney transplant may be needed. Your doctor will create a plan tailored to you.
When is surgery considered?
Surgery is rarely needed, but sometimes large cysts causing severe pain or blockage may be drained or removed. In some cases, one or both kidneys may be removed if they become too large or infected.
Living with this condition
Living with PKD means regular checkups, taking medications as prescribed, and watching for changes in your symptoms. Most people can work and enjoy daily activities with proper management.
Lifestyle tips
- Stay active with moderate exercise, such as walking or swimming.
- Manage stress through relaxation techniques or hobbies.
- Avoid heavy lifting or contact sports that could injure the kidneys.
Diet and exercise
A balanced diet low in salt and moderate in protein is often recommended. Stay well-hydrated. Exercise helps control blood pressure and weight. Talk to your doctor about how much water and protein is right for you.
Mental health and emotional wellbeing
Living with a chronic condition like PKD can cause worry, anxiety, or sadness. It's normal to feel this way. Talk to your healthcare team about how you're feeling — they can offer support or refer you to a counselor.
Prevention
PKD cannot be prevented because it is a genetic condition. However, early diagnosis and good management can slow the progression of kidney damage.
Vaccines
Staying up to date with recommended vaccines, such as the flu and pneumonia vaccines, is important to prevent infections that could stress the kidneys.
Screening programmes
If you have a family history of PKD, screening with an ultrasound or genetic test can help catch the condition early, even before symptoms start.
Complications
If left untreated
- High blood pressure that damages the kidneys and heart
- Kidney failure, requiring dialysis or a transplant
- Infections in the cysts that can be serious
- Rupture of a cyst, causing sudden pain and bleeding
- Aneurysms (bulging blood vessels) in the brain in some people
Long-term outlook
With early diagnosis and proper care, many people with PKD live well for decades. While kidney failure may occur later in life, treatments like dialysis and transplant offer hope. Research continues, and new therapies are being developed.
Find support
International organisations
- PKD International
- National Kidney Foundation
Local organisations
- NHS – Polycystic Kidney Disease · United Kingdom
Helplines
External links open third-party websites. Ruqelo Health is not responsible for external content. Listing an organisation does not imply endorsement.
Always verify with your doctor
Health guidelines vary by country and region. The information in this article is based on international clinical guidelines but may not reflect the specific guidelines, medications, or practices in your country. Always discuss your health concerns with your own doctor or healthcare provider, and refer to your local national health guidelines where available.
Important notice This information is for educational purposes only. It does not replace professional medical advice, diagnosis, or treatment. Always consult a qualified healthcare provider about your specific situation. If you are experiencing a medical emergency, call your local emergency services immediately.
Sources and guidance
This article is educational and is prepared with reference to recognized health information and clinical guidance sources where available. Specific source links may vary by topic.
Last updated: July 16, 2026
Educational note: This information is for education only and is not a diagnosis.
Use it to support, not replace, advice from a licensed clinician.
If symptoms are severe, worsening, or urgent, call your local emergency number or seek emergency care.