26 February 2021
“At that time, I knew nothing about this rare disease. There was little information and guidance available outside of the hospital setting.”
These are the words of Linda Bradbury, a training and support officer at The Shrewsbury and Telford Hospital NHS Trust (SaTH), which runs the Royal Shrewsbury Hospital and the Princess Royal Hospital in Telford.
Linda is one of 3.5 million people in the UK who will be affected by a rare disease at some point in their lives.
Linda, who has a rare skin condition called Pityriasis Rubra Pilaris (PRP), has chosen to share her story as part of Rare Disease Day, which will take place on Sunday (28 February) and is an opportunity to raise awareness of rare conditions and improve access to care, treatment, information and support.
A disease or condition is defined as rare if it affects fewer than one in 2,000 people within the general population. Currently, there are over 6,000 known rare diseases and new conditions are being described through medical literature on a regular basis.
A rare disease will affect one in 17 people at some point in their lives. This amounts to 3.5 million people in the UK.
The majority of rare diseases currently have no effective treatment.
Kal Parkash, Equality, Diversity and Inclusion Lead for SaTH, said: “I want to create and influence an ‘everyday inclusion’ culture where staff bring their authentic self to work and where we all have a sense of belonging. My focus is on ensuring that we treat each other with kindness, care and compassion.
“Working with the Staff with Disabilities network, we are keen to raise awareness of the broad spectrum of disabilities, so that we are able to better support each other. This year is the14th year that Rare Disease Day as been co-ordinated internationally.
“Building awareness of rare diseases is so important because one in 17 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed.
“Rare Disease Day improves knowledge amongst the general public of rare diseases, while encouraging researchers and decision makers to address the needs of those living with rare diseases.”