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Overcoming the Guilt of a Medical Diagnosis

May 7, 2026

Sharron Rouse, founder of Kindness for Kidneys International, shares her journey of being diagnosed with kidney failure at age 31, initially attributed to lupus or pregnancy complications. After years of disease management, dialysis, and eventually receiving a kidney transplant from her sister, she discovered through genetic testing that her condition was caused by APOL1-mediated kidney disease (AMKD), a genetic variant primarily affecting people of West and Central African descent. This discovery provided her with answers and relief from uncertainty about the cause of her illness.

Who is affected

  • Sharron Rouse (the author, who experienced kidney failure and FSGS)
  • Rouse's family members who had to help her navigate the diagnosis
  • Rouse's sister who served as her kidney donor
  • Rouse's parents who passed on the APOL1 genetic variants
  • People identifying as Black, African American, Afro-Caribbean, Hispanic, or Latino/Latina with West or Central African ancestry who may carry APOL1 gene variants
  • Healthcare providers and patients being educated about AMKD
  • Communities impacted by this genetic form of kidney disease

What action is being taken

  • An annual campaign is being conducted on April 28 for APOL1-Mediated Kidney Disease Awareness Day to educate the public, healthcare providers, and patients
  • Steps are being made to address clear diagnosis and the impact of the disease in affected communities
  • Organizations such as the American Kidney Fund are focusing on prevention, treatment, and post-transplant care
  • Rouse is actively advocating and supporting kidney disease research and awareness through organizations she has created and supports

Why it matters

  • This matters because APOL1-mediated kidney disease is a genetic condition that disproportionately affects people of West and Central African ancestry, causing rapidly progressive kidney disease. Genetic testing can provide definitive answers about disease causation, relieving patients from guilt or uncertainty about lifestyle factors causing their condition. Understanding genetic predisposition allows for personalized medical approaches and earlier intervention. The condition represents a significant health disparity affecting specific racial and ethnic communities, making awareness and education critical for early detection and proper treatment.

What's next

  • Individuals at risk are encouraged to talk to their doctors about genetic testing options
  • People can learn more about AMKD at KidneyFund.org/APOL1Aware
  • Those affected should discuss personalized medical approaches with their healthcare providers

Read full article from source: The San Diego Voice & Viewpoint