Epidermolysis Bullosa (EB) is a rare disease whereby the skin blisters and peels at the slightest touch. Living with EB has been likened to living with third degree burns.
It is very painful, and sufferers must be bandaged every day with dressings to protect and medicate their wounds.
The Royal Melbourne Hospital runs an EB clinic through its dermatology service and cares for 34 patients that live with the rare disease.
The RMH clinic provides a multi-disciplinary approach to all EB patients, where possible our patients will see multiple specialists in the same day to limit time at the hospital, and give the patients the most comprehensive care.
One of these patients is 24-year-old Nurbanu, who over the years has learnt to manage the condition to live a normal life.
“I have always lived with EB, so I don’t know any different, but there are things that can be hard, I need to wear comfortable shoes all the time, because the blisters on my feet can make it hard to walk long distances,” Nurbanu said.
Nurbanu is currently finishing her teaching degree. Despite balancing her EB she has been able to complete her study and is hoping to land her first high school teaching job soon.
“EB affects your appearance, so that can be hard too – there is a lot of stigma and misunderstanding about EB patients,” she said.
Throughout her high school teaching placements she has raised awareness of her condition with her students, to remind them that everyone is unique and that is something that should be embraced.
“I have EB and I am visually impaired, and that is part of who I am, but only one part, we should all embrace our uniqueness,” she said.
It is estimated that there are around 1,000 people in Australia who have some form of EB.
RMH EB Nurse Consultant, Lauren Weston helped establish the RMH EB clinic, with her experience at the Royal Children’s Hospital, families were able to transition to the RMH.
“For a lot of families it gave them peace of mind knowing we knew their story and how they had managed EB through childhood,” Lauren said.
EB patients are always living with some sort of pain, and there isn’t much pain management that can assist, often EB patients can be quite stoic and hesitant to ask for help.
“Part of my role is making sure they know what supports and help are available to them, whether that is assisting with wound management or psychological support,” Lauren said.
DEBRA Australia is a not-for-profit volunteer based organisation which assists in improving the lives of children and adults living with EB. Each year during EB awareness week DEBRA hosts a charity walk.
“DEBRA does so much for families with EB, from helping pay bills, providing the patients with a community and other financial and emotional supports,” Lauren said.
If you would like to support the RMH dermatology team to raise funds for Debra an EB charity. For more information head to this link: http://everydayhero.com.au/event/walk-for-wings-2020