Cure EB: Healing the Wounds
Imagine giving birth to a baby girl and noticing pieces of skin missing from her body almost immediately. \xa0
For Sharmila Nikapota, this was the case with her firstborn, Sohana. Genetic testing revealed that she was one of the over 500,000 people globally suffering from Epidermolysis Bullosa (EB), a \u201cconstantly painful and debilitating\u201d skin condition where minimal contact can lead to blisters, wounds, tissue damage, eating difficulties, and eye injuries, among other symptoms. After seeking answers for her daughter\u2019s prognosis and not getting any, Sharmila started Cure EB to educate people and eventually discover ways to manage this painful condition. With the UK approving a first-of-its-kind topical treatment for EB, she hopes it\u2019s the first of many that can give patients like her daughter a better quality of life.
Join Sharmila as she discusses how Sohana\u2019s experience with EB has shaped her personality, the origin and mission of Cure EB, the challenges of managing Sohana\u2019s condition, and what you can do to further Cure EB\u2019s ultimate goals.
Show Notes\xa0
Cure EB - Accelerating Research to End Painful Skin
Birch Bark Extract: A Review in Epidermis Bullosa
Charles River | Cell and Gene Therapy
Charles River | Rare Disease
Eureka Blog | Living Rare
Krystal Biotech Touts Topical Gene Therapy Uptake