What are Brittle Bones?
Osteogenesis Imperfecta (OI) is a genetically-linked condition which causes abnormalities in the collagen within the bone structure, It is quite distinct from more widely known conditions, such as Osteoporosis, which are related to a loss of Calcium in the bones.
OI is genetically linked and may be inherited through either or both parents or arise spontaneously with no prior history in either of the parents’ families.
There are estimated to be 3,500 – 4,000 people with OI in the UK, but studies suggest there may be a significant number of undiagnosed or misdiagnosed cases.
Living with OI
There are several types of OI and people with the condition may experience only 10 – 20 fractures during their childhood years. Others may have 100 or more fractures continuing throughout their adult life. Severe fractures may require long periods of hospital treatment.
Fractures may occur for the first time immediately after birth or within the first few years of learning to walk and exploring the world. This is obviously a difficult time for the family of an OI child and a large part of the Societys’ work is to provide guidance, support and information for these families.
Parents often imagine the worst when they have a disabled child and as OI is a painful condition with significant deformities in more severe cases, their fears seem fully justified.
Only by meeting and talking with other families in the same situation can they get the support and reassurance they need, something which no phoneline, social worker or doctor can really provide.
In fact most people with OI, given the support they need and often the use of specialised equipment can lead active and fulfilled lives.
Treatment of OI
There is nor “cure” for OI. Work is progressing into a number of possible drug treatments but these are still at the stage of clinical trials and are not generally available.
Orthopaedic Surgery can be of help in many cases but each fracture must be treated carefully to prevent deformities of the bone developing during the healing process.
Is any special equipment, or special educational provision, required?
Most children with OI can enjoy a high standard of mobility, though some will require the use of very specialised wheelchairs which may not be available through local statutory services.
With appropriate support, and attention to practical issues such as access to school buildings, even the most severe OI cases can be educated in mainstream schools.
The Brittle Bone Society can help anyone with OI in obtaining the equipment they need and advising on issues such as accessibility.
[boxibt style=”success”]Information Courtesy of:
Brittle Bone Society
Contact; Raymond Lawrie, Administrator
Address:- 30 Guthrie Street
Dundee, Scotland DD1 5BS
Registered Charity No. 272100
Telephone (01382) 204446
Fax:- (01382) 206771
Freephone Advice and Information Line:- 08000 28 24 59
E mail: firstname.lastname@example.org
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