#epidermolysis-bullosa

[ follow ]
#gene-therapy #topical-treatment #rare-disease #disability-advocacy #emma-fogarty #bullying #vedder-cup
Health
fromIndependent
6 days ago

EB campaigner Emma Fogarty: 'No one has ever made it to 50 - it's scary'

Emma Fogarty, Ireland's oldest survivor of epidermolysis bullosa, endures daily pain, past bullying, and advocates for others through initiatives like Emma's Butterfly Garden.
#gene-therapy
Alternative medicine
fromenglish.elpais.com
4 months ago

High blood pressure medication for adults also helps children with butterfly skin

New gene therapy shows promise in healing epidermolysis bullosa wounds, while repurposed drugs like losartan also provide potential benefits.
more#gene-therapy
US news
fromLos Angeles Times
1 month ago

MLB's newest trophy is a guitar. Obviously, Eddie Vedder had to give it a test drive

Eddie Vedder’s custom Fender Telecaster, the Vedder Cup, serves as a trophy and charity symbol raising awareness and funds for epidermolysis bullosa.
fromIndependent
3 months ago

'Sophia will do Irish dancing or football but afterwards it's like her feet are burning' - parents of 'butterfly skin' sufferer tell of brave daughter's struggle

Epidermolysis bullosa (EB) affects the skin's ability to withstand friction and trauma, causing painful blisters and sores that can limit mobility and quality of life.
Parenting
[ Load more ]