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The experience of living with genetic disorders is far more complex than its medical features.

Genetic disorders have powerful effects on families. They may affect not only the physical health, but also the psychological, emotional and social well-being of families and their children.

Often, families spend years living with a genetic disorder without knowing its name or cause. Depending on the condition, constant care and attention is required, while medical costs can be daunting.

Though every family reacts differently, living with a genetic disorder is a lifelong experience for all. Understanding the unique aspects of genetic information can minimize the distress and maximize the benefit for both children and families. They can also help other family members make decisions about their own lives.

Sharing stories about people and experiences can be one of the most effective ways to communicate the importance of genomic information. The following stories are powerful examples.

Spotlight stories

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Meet Areti

Suffering from spinal muscular atrophy (SMA) type 2

Areti is a 28-year-old young woman suffering from spinal muscular atrophy (SMA) type 2, a severe neurological disease that leads to gradual weakness and atrophy of the muscles, which destroys the patient’s motor skills.

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Meet Anastasia

Diagnosed with cystic fibrosis at 5

Anastasia was diagnosed with cystic fibrosis at 5. She was the first Greek woman with this disease to wake up from a coma after 32 days.

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Meet Suzie

Diagnosed with Generalised Dystonia

Suzie Birchwood is a dancer, choreographer and the Artistic Director of Arc dance. Suzie has Dystonia and is a wheelchair user.