I was delighted to be one of twenty artists selected for the Translating Science through Art 2024 project. Cambridge Rare Disease Network(CamRARE) and LifeArc medical research charity partnered to develop two exhibitions of artworks created in response to the work of scientists researching rare diseases.
My piece is titled Medical Mystery Tour – my daughter’s search for a diagnosis
It is a pen and watercolour collage
I was partnered with the scientists Crina Samarghitean. When I learnt about Crina’s work to harvest and organise published data of rare diseases in order to make a useful diagnostic tool, my immediate thought was that I hoped my daughter’s consultant knew about this!
My daughter (22) has been ill for over a year and is awaiting the results of genetic testing. She is due to sit her Oxford finals this summer, but struggles with a fever every single day, and is always cold, fatigued, and breathless. Her blood tests and symptoms suggest inflammation, but every test for infection comes back negative. Her life has completely changed.
Diagnosis of rare diseases usually happens in childhood. I decided to document her journey as a young adult, with all the anxiety, disruption and admin that she has to deal with. All the pieces of the medical mystery puzzle are also the pieces of her life.