General
COVID-19 raises fresh challenges for children with epidermolysis bullosa and their family
Life can be incredibly difficult when even eating lunch, or rolling over in the middle of the night, can cause you agony.
That’s the reality for siblings Nur Siddiqah and Muhammad Azraqee Azny.
They have a rare genetic disorder called epidermolysis bullosa (EB), which some call “the worst disease you’ve never heard of”.
Key points:
- Around 500,000 people live with epidermolysis bullosa, a genetic skin condition with no cure
- Scientists are exploring different treatment options: protein therapy, cell therapy and gene therapy
- Families say the COVID-19 pandemic has brought significant challenges, such as increased isolation
It means the layers of their skin aren’t anchored together properly, making it extremely fragile.
They are prone to…
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