EI CURE PROJECT
The EI Cure Project is a global not-for-profit organisation including patient advocates and worldclass gene editing researchers collaborating to find a cure for Epidermolytic Ichthyosis (EI). EI is a rare (1 in 300,000) genetic skin condition which can be inherited or occurs spontaneously during pregnancy. EI is characterised by blistering and skin fragility, alongside excess skin growth (Hyperkeratosis) of the joints and flexures which limits mobility.
There is no cure, so it's necessary to make lifestyle changes to reduce the risk of wounds and infections, and try to manage the pain and discomfort with long baths, exfoliation, wound care, and by applying many different creams.
The care routine takes 2-4 hours every day, and most people with EI need disability support for life. Care is costly and doesn't get easier with age. www.eicureproject.com/donate
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