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Brittle Bone Society

Actor Brian Cox presents an appeal on behalf of the Brittle Bone Society, a charity focused on improving access to care, research and campaigning for those who live with the disease.

8 minutes

Last on

Mon 18 Nov 2024 02:25

Brittle Bone Society

Brittle Bone Society

The Brittle Bone Society (BBS) is the only charity in the UK supporting people living with Osteogenesis Imperfecta (OI).听

Imagine living with a condition where simple acts such as sneezing, coughing or rolling over in bed could result in having a fracture, the world becomes a risky place. Living with OI means navigating a world where stairs, playgrounds, and even crowded pavements become hazardous. Yet, beyond the fractures lies a daily struggle with pain and physical limitations.

That鈥檚 why the care and support provided by Brittle Bone Society (BBS) is vital.

By providing access to tailored resources, specialised equipment, hosting events and championing research the charity ensures that individuals with OI can navigate their unique challenges with greater confidence - fostering a space where lived experiences are understood, creating a community spirit for those living with this rare condition.听

There are around 5000 individuals living with OI in the UK.听听OI is a genetic bone disorder characterised by fragile bones that break easily. It is also known as brittle bone disease. A person is born with OI and will be affected throughout their lifetime. It is a disorder of collagen, where the collagen may be of poor quality, or there just may not be enough to support the mineral structure of the bones. There is no cure!

By supporting the Brittle Bone Society, you are making a difference to the lives of people affected by OI.听听We could not carry out this work without the generous support from people like you and promise that every penny donated will be put to great use.

Brian Cox

Brian Cox

Hello, I鈥檓 Brian Cox and I鈥檓 proud to support the Brittle Bone Society鈥檚 Lifeline Appeal. I鈥檝e had the honour of supporting their past work, and helped promote an appeal for them a few years ago.听

The Charity was founded in my hometown of Dundee in 1968 and has been supporting individuals living with OI for over 56 years. Margaret Grant (a fellow Dundonian) established the charity when she found there was no support for people with OI and that very little was known or understood by the healthcare professionals at the time about diagnosing and treating this rare condition.听

The charity continues to work hard supporting individuals and their families and builds on their strong relationships with healthcare professionals, with the focus in advancing the care of those with OI throughout the UK.

I am honoured to support a charity that supports people living with OI.

Monique

Monique

Living with severe OI, Monique is a model, wheelchair dancer, and advocate who is a great role model in the OI community.听

Monique has received numerous wheelchairs from the BBS over the years, an essential resource that enables her to take control of her mobility and explore the world around her. OI can make walking and daily movement incredibly painful or risky, or for some they are just not able to walk - but with the right wheelchair, people living with OI can travel safely and independently. Thus, enabling a greater quality of life, allowing for easier navigation in daily activities while minimising the risk of fractures.听

Monique says that without the right chair she wouldn鈥檛 be able to hold down a job, wouldn鈥檛 be able to do normal daily tasks such as shopping, travelling or just being able to make a coffee. If it weren鈥檛 for the support from the BBS, she would not be able to afford a specialised chair to suit her needs.

Amna

Amna

Amna is 21 and lives with a severe form of OI. As a child Amna felt very alone and struggled to keep friends, largely due to having to spend long periods at a time in hospital.听听She also recalls being left on her own in the playground as other children didn鈥檛 understand her and she couldn鈥檛 participate in all the activities they did.听

As she has grown up, she has really come to value the support of the Brittle Bone Society.听

Amna says she was 鈥渂lown away鈥 when she attended the BBS OI Can Outdoor Event and was amazed by all the exciting things wheelchair users could do. She never thought she could participate in such things as cycling, zip wiring, archery etc., stating that the weekend was beyond her wildest dreams.

Amna and her family have received various support over the years from equipment and support to help them attend our events.

Max and his family

Max and his family

At age 1, Max was diagnosed with a mild form of Osteogenesis Imperfecta, a condition his parents, Leanne and Steve, had never heard of.听听They were suddenly thrust into a very new world not knowing what to expect for their son鈥檚 future.听听

Steve recalls his first phone call with the BBS as a very welcoming conversation where they were welcomed into a new family and given just the right amount of information. He says that the sense of being connected, informed and educated is just invaluable.

Max is now 12 and has never let his condition hinder him despite the pain he suffers on a daily basis and the endless hospital visits he needs for treatment.听听

Max loves attending Brittle Bone Society Events where he can talk to other children who understand what he is going through.听听He also really appreciates receiving the Hospital Kids packs which are full of goodies for when he goes into hospital.

Credits

Role Contributor
Presenter Brian Cox
Production Assistant Megan Sedgwick
Production Manager Katie O'Hanlon
Researcher Melissa White
Executive Producer Hardeep Giani
Producer Charlotte Denton
Director Charlotte Denton

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