Rare Disease Day 2022 Case Study Portraits
Summer of last year I was incredibly lucky to help create six individual illustrated portraits for Eurordis for their Rare Disease Day 2022 campaign whilst working for Shape History.
Each portrait featured six real life case studies of an individual fighting with a rare disease in different parts of the world needing help.
Tshepiso
20 year old Tshepiso has been coping with a rare bleeding disorder known as Von Willebrand’s disease and can’t access the right treatment. She juggles a job, her baby and her condition which has been difficult, particularly during the pandemic.
Wafic
Wafic who was diagnosed with Duchenne Muscular Dystrophy, a rare and incurable genetic disease. he needs support for daily activities but he lives his life to the fullest thanks to support from his family.
Jelena
Jelena from Serbia, from birth has been living with Cystic Fibrosis (CF), a genetic mutation that makes it difficult to breathe who deals with limited funding from healthcare systems in Serbia.
Vasco
6 year old Vasco from Peru who lives with Gaucher’s Disease, which sometimes makes it difficult for him to have fun with other children his age.
Nada
22-year-old Nada from Egypt is living with epidermolysis bullosa, a rare disease that affects the skin, overcoming challenges of social integration, and being bullied due to her condition.
Takayuki
Takayuki from Japan who lives with Retinitis Pigmentosa, a rare eye disease, which means he needs to use special devices, such as magnifying reading devices and screen reader applications.
Rare Disease Day 2022 Campaign Poster
Despite those challenges, all these people stay positive and are grateful for the opportunity to meet kind people who help him along the way. Rare Disease Day help to bring awareness of rare disease to the outside world so no one has to suffer alone. In February 650 buildings were lit up for #RareDiseaseDay and thousands of events were organised in over 100 countries
Rare Disease Day 2022 Campaign Poster
But awareness-raising must continue this week and beyond because for the 300 million people living with a rare disease, every day is Rare Disease Day.