Report on the Victorian OI Conference, May 1995

A copy of this article was posted to the Austrialian OI listserver by
Andrew Berry and is reprinted here. Andy says there are a few local
references, but most of the information is of general interest to the OI

Copyright 1995, Andrew Berry and Susan Kerridge, all rights reserved

The OI Association of Victoria held their first conference in Melbourne
at the Royal Children's Hospital on 13 May 1995. A number of excellent
local speakers made presentations, and the local content was bolstered
by the presence of Professor David Sillence, who is currently on
"sabbatical" at the Royal Children's Hospital in Melbourne.

The conference was attended by about 60 people, mostly from Victoria,
although South Australia, Tasmania, New South Wales and Queensland were
represented. . It was good to see such a variety of people, many of whom
travelled considerable distances to attend. The breaks in the conference
gave us plenty of time to catch up with old friends and make some new

The speakers covered a range of topics, including genetics,
orthopaedics, physiotherapy and personal experiences. Some interesting
points from each of the presentations are covered in the remainder of
this article, however, a video of the conference and more detailed notes
are available if you have a specific interest.

Dr Mark O'Sullivan, an Orthopaedic surgeon at the Royal Children's
Hospital spoke about recent experiences and advances in rodding. Current
practice is to use "Sheffield Rods" which are telescopic rods (they
extend as the bones grow) with a 'T' piece on each end that is embedded
in a solid joint such as the hip or knee. These rods have less tendency
to work their way out through the skin, and last longer because they
extend as the bones grow. Unfortunately, these rods cannot be used in
the forearm and usually not in the humerus (upper arm). Currently, the
rods are being made from stainless steel, although experiments are being
carried out with other materials.

Ms Cathy Abery, physiotherapist at the hospital, spoke on current
physiotherapy techniques being used for OI patients. She encouraged OI
patients and parents to practise active movement. She also suggested
that invalid patients should be regularly placed in different positions
to ensure that most of the muscle groups are used. Cathy said that in
treating OI children, encouraging mobility through games and fun
activities is very effective.

Ms Lindy Johnston, an occupational therapist at the hospital, gave a
presentation on the role of occupational therapy (OT) for OI
children. She emphasised that OT aids can and should be used to
encourage independence in an OI patient and to make home life easier and
more fulfilling.

Professor David Sillence, clinical geneticist at Camperdown Children's
Hospital, talked about recent developments in OI genetics and
treatment. In particular, he explained "germ-cell mosaicism" which is
usually the cause of severe type III/IV OI in families with no OI
history. Max Berry and Jessica Bollen are examples of this form of
OI. Professor Sillence also spoke briefly about the growth hormone
program, saying that it has increased bone volume and muscle tone in
most patients. The results of this research, however, are still being

Dr John Bateman, genetics research scientist, spoke about the nature of
genetic mutations that typically cause OI and other connective tissue
disorders. He explained how collagen is made and "what goes wrong" with
the production of collagen in people with OI. There are two major
variations in mutations---those that reduce the amount of collagen in
bones (usually mild OI) and those that include imperfect collagen in
bones, interfering with the structure of the bones (usually more

Dr Jenny Ault, a rehabilitative specialist, spoke on the need for OI
patients, particularly adults, to take care of their bodies. She made
many suggestions, including:

* mobilisation as soon as possible after fractures is essential;
* for walkers, arch support and shock absorption in shoes is
* weight-bearing builds bones!!
* swimming is very good for muscle tone;
* rods and splints reduce weight bearing by bones and hence reduce
bone strength and therefore should be used sparingly;
* Crushed vertebra cannot be repaired, so shock absorption in
wheelchairs is useful;
* Swimming builds up the chest and lungs, reducing the likelihood of
chest infection, which is a major problem for some;
* Crutches place considerable weight and shock on the arms, so should
be padded;
* Correct posture is important to minimise neck problems (for
everyone, not just OI sufferers.

The conference was concluded by a user-experience session led by a
number of OI adults, which was enjoyed by all. Their message was "you
can do it"!

Susan Kerridge & Andrew Berry

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