ART has the power to change people's perceptions — so believes Sally Hatton whose experiences of living with a rare condition has inspired a painting in a groundbreaking exhibition to raise awareness of such illnesses.
The 28-year-old from Urmston was diagnosed with X-linked hypophosphatemia (XLH), a rare bone condition when she was just 18 months old, when she started to walk.
Now her experiences of living with the condition and the challenges she faces have been encapsulated by artist Gabrielle D’Mello in a painting in the I Am Number 17 exhibition, which recently showed at the Oxo Gallery in London.
It is hoped the exhibition will go on tour.
The exhibition has been curated by Takeda UK to raise awareness of the statistic that 1 in 17 people in the UK will be affected by a rare disease at some point in their lives — while also highlighting the care, treatment and support needs of patients, the lived experiences of people with rare conditions and diagnosis challenges.
Sally is one of 17 people depicted in the exhibition designed to raise awareness of rare conditions.
Sally, works Metabolic Support UK, a rare disease patient support organisation and volunteers with the UK and International groups for XLH patients and has started to develop her own advocacy for those living with XLH and other rare conditions.
She said: "For me, society can have very set ideas of how a ‘well’ person should look and be, and how a ‘sick’ or ‘disabled’ person should look and be.
"As the symptoms of XLH can be unusual and aren’t always consistent depending on the day or what I’m doing, I’ve found that I’m always on the edge of being different or fitting in. I particularly remember a few years ago being rudely challenged for using the priority seat on the bus and was questioned recently on why I needed to rest my feet on a cushion on the train, all by strangers.
"These events and witnessing the difference which can be made from opening the conversation about rare and hidden conditions, I want to be more open about my life with XLH. So, that we can raise awareness, understanding, and above all, acceptance."
Sally added: "I went to the launch and love the piece, it is a concept piece, and quite unusual. It depicts the many people I have met worldwide, the hard times and the support I get from my family and friends.
"I spoke the artist and she was brilliant and she asked me about the good things in my life and the difficulties I have faced.
"I hope the artworks makes people think about rare conditions and they are actually much more common than we think and help to change people's perceptions and change society by understanding the challenges people with rare conditions face and removing those barriers."
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here