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August 29, 2024

33 Things to Know About PKD | PKD Awareness

In honour of PKD Awareness Day - September 4th - here are 33 things to know about polycystic kidney disease.

  1. It’s a Genetic Disorder: PKD is inherited, meaning it runs in families and has a 50% chance of being passed on to the next generation.
  2. It’s Not Rare: PKD is one of the most common genetic disorders, affecting millions of people worldwide.
  3. It’s Not Just an Adult Disease: There’s also a form of PKD called autosomal recessive polycystic kidney disease (ARPKD) that affects infants and children.
  4. It’s More Than Just Cysts: PKD is not just about having cysts on the kidneys; it can affect other organs, including the liver, pancreas, and heart.
  5. It Can Lead to Kidney Failure: Many people with PKD eventually experience kidney failure, requiring dialysis or a kidney transplant.
  6. There’s No Cure: Currently, there is no cure for PKD, only treatments to manage symptoms and complications.
  7. It’s Invisible: PKD is an invisible illness; just because someone looks fine on the outside doesn’t mean they aren’t struggling internally.
  8. Symptoms Can Start Early: Symptoms of PKD can start in childhood or adolescence, not just in adulthood.
  9. It’s a Lifelong Journey: PKD is a lifelong condition that requires ongoing management and adjustments over time.
  10. Every Case is Different: The severity of PKD varies greatly from person to person; some have mild symptoms, while others experience severe complications.
  11. It Can Be Misunderstood: PKD is often misunderstood or confused with other kidney diseases, even by some healthcare professionals.
  12. It Can Cause Chronic Pain: PKD can cause chronic pain due to enlarged kidneys and other complications, significantly impacting daily life.
  13. Fatigue is Common: People with PKD often experience severe fatigue due to their condition.
  14. High Blood Pressure is a Major Issue: Many individuals with PKD suffer from high blood pressure, which can lead to further complications.
  15. Kidney Stones Are Common: People with PKD are at higher risk of developing kidney stones, which can be very painful.
  16. Heart Health is a Concern: PKD can lead to heart-related issues, including aneurysms and valve problems.
  17. Pregnancy Can Be Risky: Pregnancy can be risky for women with PKD due to potential complications like high blood pressure and pre-eclampsia.
  18. It’s More Than a Physical Disease: PKD affects every aspect of life, including work, social activities, and relationships.
  19. There Are Good Days and Bad Days: Living with PKD means experiencing a range of good and bad days, with symptoms that can fluctuate unpredictably.
  20. It Affects Mental Health: Living with a chronic illness like PKD can take a toll on mental health, leading to anxiety, depression, and stress.
  21. It Affects Families: PKD affects entire families, not just the person diagnosed, creating emotional, financial, and caregiving burdens.
  22. Caregivers Need Support: Caregivers, including family members and loved ones, often face physical and emotional challenges that can lead to burnout.
  23. It Requires Regular Medical Visits: Managing PKD involves regular doctor visits, tests, and sometimes multiple specialists, especially as the disease progresses.
  24. Organ Transplant Isn’t a Cure-All: A kidney transplant, while life-saving, comes with its own set of challenges, including a lifetime of immunosuppressant medications.
  25. Living Donors are Heroes: The generosity of living organ donors can be life-changing for people with PKD who need transplants.
  26. Screening is Important: Regular screening and monitoring are essential for managing PKD and catching complications early.
  27. Diet and Lifestyle Matter: Managing PKD often involves careful attention to diet, fluid intake, and overall lifestyle.
  28. Exercise Helps: Regular, moderate exercise can be beneficial in managing symptoms and improving overall well-being.
  29. Support is Vital: Emotional and practical support from family, friends, and healthcare providers makes a big difference in managing PKD.
  30. Community and Connection Matter: Engaging with others who are affected by PKD and hearing their stories can help alleviate feelings of isolation.
  31. Increased Awareness is Needed: Despite its prevalence, PKD remains a little-known and poorly understood disease, highlighting the need for greater public awareness.
  32. Research is Crucial: Continued research is essential to finding better treatments and ultimately a cure for PKD.
  33. Hope is Important: Despite the challenges, many people with PKD find hope in the support of the PKD community, advances in research, and the possibility of new treatments.

For more than 30 years, the PKD Foundation of Canada has been providing support and education, building awareness and advocating, and funding research to improve treatments and move us closer to a cure.

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