07/24/2026
This is what I have, inherited from my dad’s side…
It’s still a great day to be alive 🙌🏼🫶🏼💕
Most people who develop kidney disease can point to a cause: years of poorly controlled diabetes, or high blood pressure that went untreated for too long.
But for approximately 12 million people worldwide, kidney disease is not something they developed through lifestyle choices.
It was written into their DNA before they were born.
This is polycystic kidney disease — PKD — one of the most common serious genetic conditions in the world, and one of the least understood by the general public.
📌 WHAT POLYCYSTIC KIDNEY DISEASE ACTUALLY IS
PKD is a genetic disorder in which abnormal fluid-filled sacs called cysts develop inside the kidneys. These cysts are not cancerous — but they are progressive. They grow slowly over years and decades, gradually crowding out functional kidney tissue.
Over time, the kidneys can become massively enlarged — sometimes growing to the size of a football. The normal kidney is roughly the size of a fist. A severely polycystic kidney can be five to eight times that volume.
As the cysts grow and healthy nephrons are replaced, kidney filtering function declines — eventually, in many patients, progressing to kidney failure requiring dialysis or transplant.
📌 THE TWO MAIN TYPES
ADPKD — Autosomal Dominant PKD:
The most common form. If one parent has ADPKD, each child has a 50% chance of inheriting it. Symptoms typically do not appear until adulthood — most commonly between the ages of 30 and 50 — which is why it is often discovered incidentally, or only when a family member is diagnosed and the family is screened.
Caused by mutations in the PKD1 or PKD2 gene. PKD1 mutations cause more severe disease with earlier progression to kidney failure.
ARPKD — Autosomal Recessive PKD:
Much rarer. Both parents must carry the gene for a child to develop it. ARPKD can be detected in utero or at birth and is far more severe — it frequently involves the liver as well as the kidneys and has a more serious prognosis.
📌 HOW PKD IS DIFFERENT FROM OTHER CAUSES OF CKD
→ PKD is GENETIC — not caused by diabetes, blood pressure, or lifestyle.
However, blood pressure and other factors significantly affect how
quickly it progresses.
→ PKD often causes HIGH BLOOD PRESSURE at an earlier age than in the
general population — sometimes in the 20s and 30s — because the
growing cysts compress the kidney's blood vessels, activating the
renin-angiotensin system.
→ PKD patients often experience PAIN from cyst growth — flank pain,
abdominal fullness, or acute pain if a cyst bleeds or becomes infected.
This is different from ordinary CKD, which is usually painless.
→ PKD can affect other organs: liver cysts are present in up to 80%
of ADPKD patients. Intracranial aneurysms (bulges in brain arteries)
occur in approximately 10% of ADPKD patients — screening is sometimes
recommended if there is a family history of brain aneurysm or rupture.
📌 EARLY SYMPTOMS TO BE AWARE OF
→ Flank or abdominal pain or fullness (the enlarged kidneys pressing on
surrounding organs).
→ Blood in the urine (haematuria) — often the first visible sign.
→ Frequent kidney infections or urinary tract infections.
→ High blood pressure at a young age.
→ A family history of kidney disease, kidney failure, or early death from
kidney-related causes.
📌 THE ONLY APPROVED MEDICATION FOR PKD
In 2018, tolvaptan (brand name Jinarc in Europe, Jynarque in the US) became the first medication specifically approved to slow the progression of ADPKD in adults at risk of rapid progression.
Tolvaptan works by blocking vasopressin receptors, reducing the hormonal signal that drives cyst growth. It is not a cure — but in clinical trials, it slowed the decline in kidney function by approximately 30%.
It requires careful monitoring for liver function and is not suitable for all PKD patients. Ask your nephrologist whether you may be a candidate.
📌 IF YOU HAVE PKD — WHAT THIS MEANS FOR YOUR FAMILY
ADPKD is inherited with 50% probability per child. This creates a specific and deeply personal dimension to the diagnosis that other causes of CKD do not — the knowledge that your children may carry the same gene.
Genetic counselling is available and is strongly recommended for ADPKD patients who have or are considering having children. Genetic testing of children is possible but is an ethically nuanced decision that varies by family and is worth discussing with a genetic counsellor.
💬 Do you or does someone in your family have PKD? Comment below — and if you are comfortable sharing at what age you were diagnosed and how: many PKD patients find out incidentally, and knowing you are not alone in that experience matters. 💚
📚 RESOURCES
→ PKD overview — PKD Foundation: pkdcure.org
→ ADPKD genetic information — NKF: kidney.org/atoz/content/pkd
→ Tolvaptan (Jinarc) information: ema.europa.eu (search 'Jinarc')
