Autosomal Dominant Polycystic Kidney Disease (ADPKD) is one of the most common inherited kidney diseases. It causes multiple fluid-filled sacs (cysts) to slowly grow in the kidneys, making them larger and less efficient over time.
How Common Is It?
ADPKD affects about 1 in every 400–1000 people worldwide. Many people may not even know they have it until they undergo a health check or imaging for another reason.
Role of Family History
ADPKD is usually passed down from one generation to the next.
• If one parent has ADPKD, there is a 50% chance that the child may also inherit it.
• Rarely, the disease may appear even without family history due to a new genetic mutation.
• In some cases, a person in the next generation may not inherit it at all.
Other Organs Can Be Affected Too
While the main problem is in the kidneys, cysts and changes can also occur in:
• Liver (common, but usually harmless)
• Pancreas or spleen (rare)
• Brain (risk of aneurysm in some people)
• Heart valves (valve weakness or murmurs)
How Does ADPKD Show Up?
The most common early signs include:
• High blood pressure (hypertension) – the most frequent and earliest problem
• Pain in the abdomen or back
• Blood in urine (hematuria)
• Repeated urinary infections or kidney stones
• Gradual loss of kidney function over years
How Is It Diagnosed?
Doctors use a combination of:
1. Family history review
2. Urine and blood tests (to check kidney function)
3. Imaging tests – ultrasound, CT scan, or MRI to look for cysts
4. Genetic testing – sometimes done if the diagnosis is unclear
Managing Complications
While there is no cure yet, treatment focuses on controlling problems caused by ADPKD:
• Blood pressure control – the most important step to protect the kidneys
• Treatment of infections – with antibiotics
• Pain management – if cysts cause discomfort
• Drainage or surgery – in very large cysts causing severe symptoms
• Monitoring for aneurysms – in those with family history of brain problems
When Does It Start?
• Most people develop symptoms in their 30s or 40s.
• However, some may remain symptom-free for years, and kidney failure may only happen in their 50s or 60s.
Long-Term Outlook and Definitive Management
• Over time, some people progress to kidney failure (end-stage renal disease).
• At this stage, treatment options include dialysis or kidney transplantation.
• Yes, transplant is possible and offers the best quality of life for those with kidney failure.
Are There Medicines to Shrink Cysts?
• A medicine called Tolvaptan has been shown to slow the growth of kidney cysts and help preserve kidney function in some patients.
• However, it is not suitable for everyone and must be prescribed under specialist supervision.
Key Takeaways
• ADPKD is a common inherited kidney condition with a 50% chance of passing to children.
• The most common early sign is high blood pressure.
• Other organs like liver and brain can also be affected.
• Diagnosis is through family history, blood tests, and imaging.
• Long-term management may include dialysis or transplant if kidneys fail.
• Tolvaptan can help in selected patients by slowing cyst growth.
If you have a family history of ADPKD, regular check-ups and blood pressure control are crucial for protecting kidney health.