Thanks to the help of the great folks at Arthritis WA, I am able to attract tax deductible donations to support the establishment of integrated care for people living with brittle bones (Osteogenesis Imperfecta). You can make a direct contribution via this link and it will be tax deductible (over $2). Please give generously.
Also, if you buy one of my paintings I will donate 10% of the sale price to the cause too, either from Gallows Gallery (2-10 February) or online from 3 February 2018.
I’m sure you realise now how passionate I am about supporting people with brittle bones. Why? Because when you know more about the condition either through a personal connection or from just learning about it, you understand how much integrated care is so needed in WA.
Here are some summary details about OI and treatment in WA:
Osteogenesis Imperfecta (OI) is a chronic genetic condition starting in utero. It is estimated that 1:15,000 are born with OI. There is no gender or geographic preference.
OI is a collagen disorder that primarily affects the bones, causing them to be “formed imperfectly”, fragile and “brittle”.
OI may result in: short stature, blue sclerae, hearing loss, muscle weakness, hypermobility, restricted breathing and might affect the teeth (dentinogenesis imperfecta). Children born with more severe Types of OI can often sustain fractures during pregnancy or delivery. It can even result in infant death, often due to respiratory failure during or shortly after birth.
Optimal management of OI requires a multidisciplinary approach involving paediatrician, endocrinologist (bone and mineral physician), rehabilitation specialist, orthopaedic surgeon, dentist, geneticist, social worker/psychologist, physiotherapist, and occupational therapist.
At Perth Childrens’s Hospital/Princess Margaret Hospital, there is currently no formal rehabilitation regimen for children with OI who have experienced fractures and other affects. In many cases they are treated as any other child with a fracture and often this is to their detriment.
A designated patient-centred care is required.
Areas of support provided in an integrated care facility with dedicated staff would include: school, psychological support (e.g. needle phobia, social adjustment), medical linkages (e.g. audiology, dentistry, genetics), allied health support (e.g. physiotherapy, occupational therapy, dietetics, podiatry), contact to support groups (like OI Society of Australia, international OI groups, Short Stature Association of Australia).
Come along to the ART+MEDICINE talks at Gallows Gallery on Sunday 4 February 2018 to learn more. Find details on my other blog post.
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