Amelia

Like many girls her age, three-year-old Amelia loves ballet and swimming but if she’s not careful her beloved pastimes can leave her in terrible pain.

Amelia lives with the rare lifelong disease Epidermolysis Bullosa (EB) which causes the skin to be very fragile, and prone to blister and peel at the slightest touch. Even high humidity can cause irritation. If these blisters become infected, they can cause serious problems.

EB is caused by a genetic fault affecting the proteins that hold the layers of skin together. There is currently no cure for EB, but it can be managed through the use of specialist dressings that medicate and protect the wounds.
Amelia showed signs of the condition from birth with two small blisters on her hands, and then her first major blister appeared at five weeks. After numerous doctors’ appointments, she was diagnosed with EB at four months old, and genetic testing confirmed that she received the gene from her father (who carries the gene but does not have symptoms).

Fortunately, Amelia has simplex, which is the most mild type of EB, and her parents Shannon and Damian are able to manage her condition with the support of the specialists and nurses of Queensland’s only EB clinic in the Queensland Children’s Hospital. Every day, Amelia’s skin is bathed and covered with specialised dressings (some of which can take up to two hours to apply) which medicate the wounds. The family also relocated from Proserpine to the less humid climate of the Sunshine Coast to help her condition.

“We have now fitted EB into our daily life,” says Shannon.  “Amelia is a trooper. When she was younger, blister management was a struggle because she did not know why we had to pop them, and she got frustrated when she couldn’t walk due to the pain.  Now, though, she is old enough to let us know when a blister needs popping.

‘We just take every day as it comes – and have found that distraction is the key to blister management!”