Butterfly children find hope in nurse’s care

The true measure of any healthcare initiative lies in its impact on patients. At The Royal Children’s Hospital (RCH), the Epidermolysis Bullosa (EB) Nurse Consultant, Lauren Weston, has touched the lives of her young patients in profound ways. 

EB is a rare genetic condition that causes very fragile skin which can be injured very easily. A small bump, heat or rubbing can cause painful blisters. Children with this condition are sometimes called ‘butterfly children’ as their skin is as fragile as butterfly wings. 

“They call it, ‘The worst disease you have never heard of’. I quickly learnt people with this condition had their own experiences and individualised needs, there is no one size fits all, and that these families and individuals living with EB had an amazing resilience and zest for life,” Lauren shares. 

The number of new EB patients at the RCH has been steadily increasing over the years, with 13 new patients from August 2021 to July 2022. There has been a consistent need for ongoing care, with 73 review patients in the same period. 

Not only have our numbers grown considerably over the past ten years from 38 patients to now 73, but our patient complexity has also intensified, especially in the last 18 months with five babies born last year with the more severe form of EB, said Lauren.

In her position as EB Nurse Consultant, which is funded thanks to generous support from DEBRA Australia, Lauren plays a crucial role in patient care by conducting her own clinics, and providing face-to-face, telehealth, email, and telephone support. 

Lauren’s commitment to the EB community extends beyond her current role. She plans to further her educational outreach efforts, ensuring that not only hospital staff but also the broader community have a deeper understanding of EB.

“I love the education side of my role, whether that’s with families, health professionals within the hospital or community carers including childcare, schools and GPs. 

“The more awareness there is about EB and the services that are available, the better care and increasing research opportunities there will be leading to better health outcomes for our families,” Lauren says.

As the complexity of EB cases continues to grow, the EB Nurse Consultant will continue to be a crucial resource, offering both medical expertise and emotional support to those who need it most. 

I am forever grateful to be a part of the EB community. It’s been an amazing role and I hope I continue to provide families with the support and help they deserve, said Lauren. 

To support vital patient and family centred care initiatives like the EB Nurse Consultant position, and to have a meaningful impact on the lives of children, donate today.