As originally reported in PR Week; pharma company Takeda has been joined a plethora of rare patients groups to create the ‘I am Number 17 ‘ campaign which features 17 rare disease patients and family memberss. The campaign is meant to show the many faces that make up the community in order to raise awareness and to dig into the more complex emotions and experiences that can only be explained firsthand from patients. The campaign writes,
“Statistically speaking, I’ve sat on your bus to work every day; I’m out keeping active on a Tuesday; I’m there when you’re grabbing last-minute dinner ingredients from the supermarket. Who am I?”
The Campaign’s Mission
The rare disease patients and caretakers tell their personal stories to give a window into a lifetime with a chronic and rare illness. Illness and symptoms come out in the details: whether you can drive, if you need extra rest, transfusions, or doctors visits. The full impact of the disease can only be understood by seeing that the illness is not just breathing difficulty and groggy days but stress and loneliness and systemic exclusion. By sharing their health needs and systematic access issues, rare disease patients begin to have their situation heard. The founders of the movement have already brought together many distinct patient groups in hopes of connecting patients as one community by creating a storytelling platform for others to join. The campaign has spread their message using social media using the hashtag #IAmNumber17, and various media platforms have taken up the stories in print and on air. Even an art exhibition was inspired by the platform, consisting of patient art that is displayed in London at the gallery@oxo. The gallery has already been attended by 500 viewers, and those running it have discussed taking it for a tour of the UK to visit the hometowns of the 17 featured patients and to reach a wider audience in their very hometowns.
Patients Tell Their Stories
By introducing the general public to the diseases, they open their eyes to just how common ‘rare’ is. The campaign writes:
“I might have tuberous sclerosis, hereditary angioedema, Ehlers-Danlos syndrome, or any one of a myriad of conditions you’ve probably not heard of. Don’t worry, hardly anybody’s heard of my condition. I might have a rare disease or one that is extraordinarily rare. Whilst my experience gets shared with my family and friends and people similar to me, it’s not been shared much beyond that.”
The 17 featured patients share their experience with vivid description, honesty, and eloquence. One patient is David who has occipital horn syndrome. He explains the story of waiting 25 years to receive a diagnosis, whilst living with big unmet needs. David wrote,
“ If you’ve grown up with your disease from day one, you never know what it’s like to be healthy. I’ve never lived a day without pain. The disease affects every aspect of my life.“
The campaign encourages other patients to join in and show the public the many faces and experiences experienced by few.
