The Courier & Advertiser (Fife Edition)
Scot who has legacy to be proud of
As Dundee’s Brittle Bone Society celebrates its 50th anniversary, Caroline Lindsay finds out more about this rare, lifelong condition and the society’s remarkable founder
Since her birth in 1961 Yvonne Grant has endured more than 450 fractures. Even turning in bed, sneezing or lifting a cooking pot can cause her fragile bones to break.
Yvonne was born with osteogenesis imperfecta (OI), also known as brittle bone disease. OI is a disorder of collagen, a protein which forms the framework for the bone structure. In OI the collagen may be of poor quality or there just may not be enough to support the mineral structure of the bones. This makes the bones weak and fragile and results in them being liable to fracture at any time, even without trauma.
OI is a rare condition and it’s estimated the number of people born with the condition is approximately one in every 15,000: that equates to around 5,000 individuals in the UK living with brittle bone disease.
Yvonne was diagnosed when she was 11 months old, after she broke her leg. “The orthopaedic doctors and surgeons I saw as a child told me I could walk but then I fractured right before their eyes, during clinic. Calipers got me up and able to take a few steps but I was never able to walk the length of the lobby,” she says.
“When I was 17 I decided I’d had enough of struggling with mobility and opted for life in a wheelchair and in safety, although my parents continued to encourage me to walk with crutches when I could.”
Yvonne took morning classes at Abertay University and enrolled for a degree in information management.
“I was over the moon when I gained my degree and, needless to say, mum, dad and the rest of the family were jumping for joy,” she smiles.
Yvonne’s mum, Margaret Grant, was the founder of Dundee’s Brittle Bone Society, which is celebrating its 50th anniversary this weekend with a scientific symposium incorporating History Bones, an exhibition shortly to be on display at the city library in the Wellgate Centre.
Margaret, born in 1933 with OI, was aware there was no support for people with the condition and that many medical professionals knew little or nothing about diagnosing and treating the condition. When her daughter Yvonne was born in 1961, very little had changed and she set about changing this with the creation of the Brittle Bone Society. Now based in Guthrie Street, the society began in a small house in Byron Crescent.
Patricia Osborne has been CEO of the society for the past nine years. “Long before computers, email and social media, Margaret managed to make a huge impact in the world of rare disease. She helped fundraise £342,000 from a TV Magpie appeal – the equivalent of £2.1 million in today’s money,” says Patricia.
“She is held in such high esteem and genuine affection – it’s quite a legacy and we’re carrying on what Margaret started.”
The scientific symposium will see families from all over the country, and international healthcare professionals, converging on the Apex City Quay Hotel for a weekend of celebrations. One special guest will be former Magpie presenter Jenny Hanley.
The History Bones exhibition will tell the story of the development of the Brittle Bone Society, and the medical developments and treatments over the years for OI and will be on display at the City Library from Tuesday.