Posts in Patient Voices

When Genetics Becomes Personal

A geneticist shares his deeply personal journey of an unplanned[…]

The SRY Gene Test in Athletics: Defining Females, Defining Fairness

World Athletics now mandates SRY gene testing for female athletes.[…]

Menstruation, Disability, and Dignity

Menstruation is natural, but for intellectually disabled females it can[…]

When Genetics Repeats Itself

A family’s struggle with Hunter syndrome (MPS II) across generations[…]

A Leap of Faith and the Butterfly Effect

When a rare metabolic disease left a young boy fighting[…]

The Boy Who Carried the Curse

A powerful reflection on a boy misunderstood as cursed, later[…]

The Child Who Taught Us Grace

A heartfelt reflection on a young girl with Down syndrome[…]

The Baby Who Couldn’t Kick

A deeply moving real-life story of a child diagnosed with[…]

The Choice They Made

After a prenatal diagnosis of Edwards syndrome, a couple chose[…]

When a Diagnosis Is Not the Only Burden

Families of children with rare genetic disorders often face not[…]

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