Blayne Baker Garwood
Digital Resources Manager, Beacon for rare diseases
I was diagnosed with multiple sclerosis (MS) at 26. I’ve come to see patient groups as David in the bible story ‘David and Goliath.’
Who recalls growing up playing ‘Spot The Difference’? You are given four images and told to locate the one that wasn’t like the rest — the one that didn’t belong. What happens when that image is you?
Challenges of tackling rare disease
Being born with anaphylactic food allergies, my childhood was constantly plagued by a sense of not belonging — being ‘other.’ Sure, I looked like the other children, but I was navigating an adult world with adult consequences at an age when my peers were simply worried about making friends.
I was clearly different. I didn’t fit the mould. I couldn’t even be ‘box standard’ when it came to my allergies: anaphylactic allergies to watermelon — when watermelon is 90% water; it’s laughable.
I know what it’s like to face a future shrouded
in mystery — never knowing what’s next.
A rare understanding
I know the feelings of isolation and fear that come with a chronic illness. When I began my career at the UK rare disease charity, Beacon, I quickly developed a kindred spirit with the rare community. There is nothing that a parent won’t do for his or her child. I’ve seen this relentless fire in my own parents’ eyes when they had to advocate for me when I was young. I know what it’s like to face a future shrouded in mystery — never knowing what’s next.
Why patient groups are essential
Patient groups are vital. These compassionate and knowledgeable groups are who my family and I turned to after each shocking diagnosis. I’ve come to see patient groups as David in the Bible story ‘David and Goliath.’ Patient groups (David) are the brave souls who face institutions and systems that are far bigger than themselves (Goliath) to fight for a better future for their rare disease community.
Patient groups arrive with one or two tools (David’s slingshot and stones) and are aided by umbrella organisations, such as Beacon, who upskill them in key areas for success. Patient groups already have the belief, determination and passion necessary. It is our duty to arm them. Spoiler alert: David wins.
