Doctors said I might not make my second birthday with muscle disease SMA. Now I'm 25
Summary
BBC journalist Ben Morris, who has Spinal Muscular Atrophy (SMA), shares his experience of living with the condition. Singer Jessy Nelson supports testing all newborns for SMA after her daughters were diagnosed with the disease. SMA is a muscle-weakening condition that can be life-threatening, but there are treatments available.Key Facts
- Spinal Muscular Atrophy (SMA) is a rare genetic condition causing muscle weakness that worsens over time.
- Doctors did not expect Ben Morris to live past toddler age, but he is now 25 years old and works as a journalist.
- SMA affects about one in 14,000 births worldwide.
- Gene therapy drug Zolgensma can reduce muscle damage in newborns with SMA, but isn't a cure.
- Jessy Nelson calls for newborn screening for SMA, which Scotland plans to start doing routinely.
- Treatments help manage symptoms, including a drug called Risdiplam for adults.
- SMA impacts respiratory health, making colds and infections potentially life-threatening.
- The UK is reviewing whether to introduce SMA screening for all newborns.
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