Living with EB: My Story By Daisy Pearson
My name is Daisy, and I live with Epidermolysis Bullosa (EB). Like many people living with EB, I have faced challenges along the way, but I have also had incredible opportunities, learnt valuable lessons and achieved goals that once felt out of reach. This is my story.
My diagnosis journey was not straightforward. It took around a year to receive a diagnosis, involving many appointments and different opinions before I was initially diagnosed at Guy’s and St Thomas’ Hospital. Last year I received a more specific diagnosis through blood testing.
I receive specialist care from Guy’s and St Thomas’ Hospital, where regular appointments with doctors, nurses and other specialists provide invaluable support. However, as EB is a rare condition, local healthcare professionals do not always have experience of EB, meaning there is still a need for greater awareness and education.
One practical intervention that has helped me enormously is using personalised insoles made at Norwich Community Hospital. They help reduce friction, improve comfort and support my walking pattern.
My educational journey has included primary school, high school, sixth form and university. There were challenges along the way, including misunderstandings about EB and assumptions about what I could and could not do. As I grew older, I became more confident in advocating for myself and focusing on my goals.
One of my proudest achievements has been completing a BSc in Physiotherapy. University provided opportunities to learn, undertake placements, build friendships and develop independence while managing the realities of living with EB.
DEBRA has played an important role throughout my life through its holiday homes, support services, educational resources and community events. Attending Members’ Weekend and other events has allowed me to meet other people with EB, learn from shared experiences and feel part of a supportive community.
My family and I have also been passionate supporters of DEBRA, raising more than £70,000 through community fundraising activities over the years.
Throughout my journey, I have discovered practical tips and products that help me manage EB. My advice is to find what works for you, make time for enjoyment and not allow EB to become a barrier to your ambitions.
One of my favourite sayings is: “Have fun and manage EB later!”
If there is one message I would like people to remember, it is this:
“EB is part of us, but not the whole picture.”
Don’t let EB stop you doing anything you want to do.