When people consider a rare disease they think of cystic fibrosis, as it's taught in schools, or ALS thanks to Stephen Hawkins and the ALS ice challenge. But usually, many rare diseases go under the radar, meaning that, in many cases, when you get the diagnosis you feel confused, isolated and helpless.
Social media has helped bring the world closer together, share information and educate people about topics they probably never considered before. Pfizer in partnership with TracyLocke Brazil and Stink Films, have helped pave the way to introduce people to rare disease, Familial Amyloid Polyneuropathy (FAP), in a moving, and beautiful way. It is not a story of defeat and fear, but instead the change that having a treatment available for a rare disease can mean. And this video is accessible for the masses, you don't have to understand the complexity of the disease to feel the empathy for these patients and to understand the feelings that they go through at the time of diagnosis. For many rare disease patients their reality is having to trade-off their dreams with their diagnosis, particularly with a disease such as FAP.
FAP is a genetic mutation which affects the nervous system, plaques are deposited in the organs and along the sensorimotor and autonomic nerves. In severe patients FAP is severely debilitating and if left untreated is fatal. The symptoms such as a loss of feeling, tingling or numbness in the hands and feet can be explained by so many different causes and it's important to raise these symptoms to the general public so that they are aware of them and can seek treatment earlier.
Social media should be utilised more by the pharma industry to help educate the general public on rare disease, but also other important topics such as antimicrobial resistance. As we look towards the future, more and more of us are using sites such as twitter and instagram, available to us at all times thanks to smart phones. However, big pharma is still behind the curve in utilising this valuable resource, and I hope that this video can be used as a launch pad to show the impact these sort of campaigns can have in raising awareness.
If you would like to view the video please watch it hear and let me know your thoughts https://vimeo.com/351217790
Earlier this month, TracyLocke Brazil created a film to highlight the symptoms of familial amyloid polyneuropathy (FAP), a rare disease that is hard to diagnose, and so far, the video has hit way above its goal projections on social media.