ABOUT ARPKD

Autosomal Recessive Polycystic Kidney Disease (ARPKD) is a name that may not resonate with many, but for those families affected by it, this rare genetic disorder becomes an all-consuming reality. ARPKD paints a landscape of both profound challenges and enduring resilience, and understanding its impact is crucial in advocating for those living with it.

Affecting approximately 1 in 25,000 children, ARPKD is marked by the growth of cysts in the kidneys, often detected even before birth through prenatal scans. These cysts compromise kidney function, leading to a cascade of medical complications. For many families, the ARPKD journey starts with the heart-wrenching news that their unborn child has enlarged kidneys. This early diagnosis is a harbinger of the medical challenges that lie ahead.

Children affected by ARPKD that survive the newborn period frequently experience early-onset high blood pressure, kidney failure, and significant liver problems. For them, life isn't just about play and learning; it's also about regular medical check-ups, dialysis sessions, and the ever-present possibility of kidney transplants.

One-third will need a transplant or dialysis in their first 10 years of life, and many need dialysis from birth until they are old enough to receive a kidney transplant. The exhaustive and constant care these young ones require is intense, and the threat of transplant rejection or other life-threatening complications is a constant shadow.

Yet, behind the clinical facade of ARPKD are stories of unmatched strength. Children battling the disease showcase courage that belies their age, while their families exemplify determination and adaptability. They weave a tapestry of hope amidst adversity, facing each day with an optimism that inspires.

These families shouldn't face this journey alone. Awareness of ARPKD and its implications is crucial. Only with understanding can there be empathy, and only with empathy can there be genuine support. Advocacy is more than just spreading information; it's about standing shoulder to shoulder with affected families, ensuring they have the resources and emotional backing they need.

Our goal is to amplify their stories, share in their triumphs, and support them in their struggles. Every gesture of understanding, every resource provided, and every hand extended in solidarity brings us one step closer to a world where families affected by ARPKD feel truly seen, heard, and supported.