BRITTLE BONES
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.
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: bbs@brittlebone.org
For Further information visit the website
www.brittlebone.org
