“As my family and friends have learned over the years, the Brittle Bone Society does incredible work to further research, raise awareness, support people living with OI and so much more.
“Every time I have phoned the office over many years, there is always someone there willing to stop whatever they are doing to ‘listen’, to give advice, to support, to encourage – this is invaluable, unquantifiable and makes whatever the issue has been seem less daunting to deal with. Even just a little help at the correct time means that people of all ages living with OI can lead more independent lives and make a difference to their lives and others at the same time.
“OI is a rare condition (around 1:15,000 families in the UK live with OI) which affects people in many different ways – it is caused by a collagen defect and as well as fracturing bones, people with OI often have muscle weakness, early hearing loss, fatigue, joint laxity, curved bones, scoliosis, blue sclerae, dentinogenesis imperfecta (brittle teeth), respiratory difficulties, easy bruising and short stature amongst other medical issues. In addition to having had around 300 cracks and fractures since I was diagnosed aged 2, OI also causes me to have spontaneous injuries to muscles, tendons, ligaments etc from little or no trauma.
“Early in 2016, the BBS got in touch with me as they knew I was really struggling to push or even use my NHS wheelchair due to increasing problems with my shoulders (on top of the usual frequent cracks and fractures) and offered to approach trusts to enable me to get a suitable wheelchair and add-ons to regain some of the independence I had lost. I am now the proud owner of an amazing titanium Tilite wheelchair and SmartDrive which means I can contemplate doing 50 walks for the BBS. In the few months I’ve had the chair, I’ve enjoyed its benefits in so many ways.
“For example, the annual BBS weekend conference may be the only time that families and individuals can ever have a ‘break’ away from home because the team work hard with members in different parts of the country to identify places that will be as barrier-free as possible. This means that we can all benefit from learning about medical developments; see real specialists in OI, perhaps for the only time in our lives; meet up with friends old and new; spend time really relaxing as everyone just ‘gets what it’s like’, without explanations, to live with OI so we can ALL feel safe – and if a fracture occurs, they’ve even thought of that. For many of us, this is the only time in a year that we can truly relax, free from the unexpected (and expected) negative attitudes and experiences of everyday life. Is 3 days out of 365 too much to ask?”