Meet Océane, one of the stars in our Rare Disease Day 2017 video, who lives with pemphigus, a disease that affects the skin and mucous membranes. Océane found life as a child very complicated, she was unable to eat sweets or salt, she was unable to do the same things as the other children around her. It was at the age of 5 that Océane began visiting hospitals and doctors, who initially believed her to have a bad case of contagious chickenpox.
She was eventually diagnosed with pemphigus.
Océane says that as a result of having a rare disease, she learnt to grow up very quickly, quicker than her peers around her. This is clearly faring her well, Océane is now well engaged in her psychology studies, looking forward to specialising in psychomotor learning next year, and focused on her ambition to work in the healthcare industry. Her interest in the field of psychology was sparked by a particularly inspiring psychologist that Océane visited at the age of 8, who focused very much on the relation between the body and the mind.
Other than this psychologist, Océane’s mother is a source of a lot of her inspiration, she describes her as dynamic and feisty. If Océane had one piece of advice for those living with a rare disease, it would be to never let go of anything and to remember that there is always hope, and that even if it isn’t hope for a cure, it can be hope for a better life.
