Shamila’s story
Shamila, whose family calls her Xhamie, lives with EB (epidermolysis bullosa), a genetic blistering skin disease. Her skin is so fragile that friction or pressure causes painful blisters. Up to 80% of her body, including her face, has been affected by blisters and skin loss. Even a hug can hurt.
Her wounds stick to her bandages, so every dressing change is painful and can cause bleeding. New blisters often appear before older wounds have had time to heal.
Shamila also has painful blisters inside her ear canals and mouth, which make hearing and eating harder. After so many blisters and so much scarring, some of her fingers and toes have fused together.
Her mom cares for her every day. In her latest updates, she shared that Shamila still has many wounds on her back and head, and that the family is taking things one day at a time.
Shamila’s family lives in poverty, without access to free healthcare. Keeping enough clean bandages and pain medicine on hand is a constant struggle.



