Epidermolysis bullosa is a group of rare genetic disease where the skin and mucosa (mouth, stomach linings) are torn and develop blister with minimal friction. The mild ones only start to show up when the children learn to crawl or walk. The severe ones can be life threatening.
Children born with epidermolysis bullosa are also known as butterfly children because their skin is as fragile as butterfly skin. And they are often in pain from the raw wound.
The list of possible problems is long and include,
🩸 bleeding from the wound
🩸 constipation, avoiding bowel movement due to pain
🩸 painful and sensitive eyes, that may even leads to blindness
🩸 scarring on scalp, muscle, tendons that leads to hair loss, contracture and deformity affecting ability to walk and move
🩸 blisters in mouth that leads to difficulty in eating and malnutrition
🩸 infection
🩸 skin cancer
And not to mention poor quality of life with social isolation, school and work absentee. This is why they need our support.
You can reach out for EB community in Malaysia here.
