​Polycystic Kidney Disease

Polycystic kidney disease is an inherited disorder characterized by development of many fluid-filled sacs (cysts) in both kidneys causing them to become enlarged.  The cysts replace the entire normal kidney tissue leading to reduced functioning of the kidneys and eventually resulting in kidney failure in some cases.

There are two types of polycystic kidney disease:

Autosomal dominant polycystic kidney disease (ADPKD): this is the most common form of polycystic kidney disease and accounts for almost 90% of the cases. It is usually diagnosed between the age of 30 – 40 years old, though in some cases children might also have it. Only one parent needs to carry the genetic flaw in order for it to be passed on to the children

Autosomal recessive polycystic kidney disease: a rarer form of polycystic kidney disease and  is passed onto the children only if both parents carry the genetic flaw. The parents don’t have the disease themselves, and probably don’t know they are carrying the problematic gene. This form of disease is diagnosed either at the time of birth or in early childhood. If the disease is severe enough, the affected children usually do not survive beyond first decade of life.​​​​​​

The two most common symptoms are headaches and persistent pain in the back and the sides, between the ribs and hips.  

  • ADPKD can also cause:

  • Kidney stones 

  • Blood in urine 

  • Urinary tract infection

  • High blood pressure​​

If you find any of the above signs and symptoms especially with a positive family history, have yourself examined by your family doctor; or you can consult the internationally trained staff of the Kidney and Bladder service line at the Aga Khan University Hospital. 
 Your time with your doctor maybe limited, so make sure to prepare for your visit beforehand. Here​ are some tips to help get you started.

Tests for polycystic kidney disease aim to detect the presence of cysts in the kidney through various imaging procedures. These may include:

  • Ultrasound of kidneys : sound waves are used to reflect signals from your body, which are translated into images using a computer

  • Computerized tomography scan: commonly called the CT scan, it involves slowly passing your whole body through a hollow apparatus that emits X-rays. The X-rays pass through your body, allowing it to be mapped and examined

  • Magnetic resonance imaging: commonly called an MRI scan, it is similar to the CT scan, except that instead of X-rays it used magnetic and radio ways to generate an image of the body​

Unfortunately, there is no cure for polycystic kidney disease. However, treatment can relieve symptoms and help you live a longer, healthier life. This may include:

  • Pain medication to suppress the frequent back and side aches

  • Medication for high blood pressure to control and slow down the disease

  • Antibiotics to treat  infections

  • Polycystic kidney disease can eventually cause the kidneys to fail. When the kidneys stop working, either dialysis or kidney transplant is needed so that toxins continue to get filtered out of the blood.

  • Family screening:  If you have ADPKD, you may want to tell your siblings that they have a chance of having the disease and should get them tested. If you have children, they also have a chance of having inherited ADPKD from you and should have them checked/screened as well.​

The Aga Khan University Hospital offers various support services to help with managing or recovering from the disease or condition. These include but are not limited to nutrition, physiotherapy, rehabilitation, specialized clinics and some patient support groups. Your doctor or nurse will advise you accordingly.

The Aga Khan University Hospital offers financial assistance to those who are in need and fulfil the eligibility criteria. For further information, you can contact the Patient Welfare Department. You can find the contact number of the Patient Welfare Department in the 'Important Numbers' section on the website homepage.

The financial counselling staff is available during office hours, at the main PBSD (Patient Business Services Department), to answer your financial queries on treatments' costs and authorize admissions on partial deposit as per hospital policies allow. The financial counsellor in the emergency room is open 24/7. You can find the contact number of the Patient Business Services in the 'Important Numbers' section on the website homepage. 

Your doctor and or nurse will give you specific instructions about the prescribed medication. Please ensure that you take or use the prescribed medicine as advised. It can be dangerous to your health if you self-prescribe. Please inform the doctor or nurse beforehand if you have experienced any adverse reactions to any medications in the past. If you experience any symptoms of drug poisoning, overdose or severe reaction please contact the Pharmacy Service at The Aga Khan University Hospital immediately. You can find the contact number of the Pharmacy Services in the 'Important Numbers' section on the website homepage. 

​The information provided on our website is for educational purposes and not intended to be a substitute for medical advice, diagnosis or treatment. You should always seek the advice of your doctor or other healthcare professional provider.