Gordon has joined with clinicians and disabled people living with Brittle Bones and associated conditions to celebrate the care given by NHS specialists to children with it across the UK.
Known as Osteogenesis imperfecta (OI) it is thought to effect 1 in 15,000 people in the UK and is a genetic bone disorder characterised by fragile bones that break easily. As well as frequent fractured bones, people can have muscle weakness, hearing loss, curved bones, scoliosis, blue sclerae, brittle teeth, and short stature.
Gordon, who co-chairs the All Party Parliamentary group for Osteoporosis, congratulated the Brittle Bone society on its 50th anniversary and the NHS specialists, which were presented with awards to celebrate the difference they were making to children’s lives.
He said: “It was a privilege to be able to go and support the Brittle Bone Society for the 50th anniversary in Parliament. It is a rare condition and because it is not as common or well known as osteoporosis,the work being done by the Brittle Bone Society to raise awareness of it is incredibly important.
“I am proud to be co-chair of the Osteoporosis group in Parliament because I saw at first hand the suffering and challenges it gave my mother for over 25 years , and the ongoing need for support for those who care for loved ones as well as more recognition of such conditions in the NHS. In the same way we need the NHS to build on its record of supporting people with brittle bones and also those who support them, so they are able to live their lives to the fullest and not be held back by the condition.”
The charity also highlighted the discrepancies that exist between child and adult services, and the need for continued and multi-disciplinary services for this lifelong condition. To find out more about the Brittle Bone Society and the work they do go towww.brittlebone.org.