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Ever wondered about our member support groups - how they got started,
what conditions they represent, what they do, what all those abbreviations
stand for? Wonder no more! With each newsletter, we will be featuring
one of our support groups, finding out more about the group's history,
the services it provides, the condition associated with the group,
and what it is like to live with that condition...
Haemophilia Foundation Victoria
13 Keith Street, Hampton East, Victoria 3188
(The Centre is open from 8:30am to 4:30pm, Monday
to Thursday)
Assisting people with bleeding disorders, their
family and friends in Victoria
About the HFV
Haemophilia Foundation Victoria Inc (HFV) is a self-help, not
for profit organisation that provides support, information and services
for people affected by bleeding disorders, their families and carers
in Victoria. HFV lobbies and advocates for the best possible services
for its members, and provides education to the community about bleeding
disorders.
HFV provides telephone contact with other members, workshops and
information sessions, Family Camps, picnics and social functions,
conferences and peer support groups. HFV can also assist with SOS
Talismans and Medic Alerts, Ambulance Subscriptions, Conference
Attendance and Educational costs. Counselling is also provided through
professional counsellors are based at The Alfred.
HFV has a range of pamphlets, books and videos on bleeding disorders,
pain relief, diet and exercise, blood borne viruses and alternative
therapies. Some information is also available through the HFV website.
HFV can organise speakers on request.
A quarterly newsletter keeps members informed of Foundation activities
and events and provides information on bleeding disorders and other
relevant topics.
History of the HFV
HFV has come a long way in the 53 years since its launch in 1954.
Here are just a few of our achievements:
- the option of home treatment
- safer product
- prophylactic treatment
- free equipment
- free product
About Haemophilia
Haemophilia is a bleeding disorder in which one of the clotting
factors in blood (Factor VIII in Haemophilia A, or Factor IX in
Haemophilia B) is deficient. The lack of clotting factor means that
people with haemophilia tend to bleed internally into joints and
muscles, leading to chronic pain and arthritis. These bleeding episodes
may occur spontaneously (without any apparent cause) or as a result
of injury. Bleeding can be stopped by infusion of the missing clotting
factor by intravenous (i.v.) injection. Haemophilia can be mild,
moderate, or severe, depending on the level of clotting factor deficiency.
Haemophilia primarily affects males, who inherit the gene for haemophilia
from their mothers, although approximately one third of all cases
appear in families with no history of haemophilia. Women who carry
the gene for haemophilia are usually healthy, although some may
have reduced Factor VIII levels, leading to a mild bleeding disorder.
Treatment
There is no cure for haemophilia, however the development of clotting
factor concentrates has meant that it can be managed effectively
through i.v. injections of blood plasma or recombinant (synthetic)
concentrates to replace the missing or defective clotting factor.
Australian children with haemophilia today face few limitations
and their life expectancy is the same as that of any other Australian
child.
Our story: ADAM - a simply Amazing
little boy
By Donna
I remember the first time I was asked “Do you have a bleeding
disorder in your family?” It was in the early hours on the
morning of 6th May 2004 and I was sitting in the Emergency Ward
of the West Gippsland Hospital at Warragul. I had just sent Grant
my husband home with our two year old daughter Emma, to try and
get some sleep while the doctors were working out what was wrong
with our seven-day-old son Adam. As far as I knew, neither of our
families my family nor my husband’s had a history of a bleeding
disorder in them.
The paediatrician on call explained that Adam’s body was
shutting down as he was bleeding internally everywhere. Adam’s
odds of surviving were 50/50. I could not believe what I was hearing;
we went from thinking Adam had picked up gastro (as he earlier projectile
vomited two feeds) to now knowing he was in a life threatening situation.
I remember thinking if only they could find out why he was bleeding
he would stand a chance of surviving.
After what seemed like an eternity, the Warragul emergency team
and the N.E.T.S team were able to stabilize Adam enough for him
to be moved by ambulance to the Royal Children’s Hospital.
Within an hour and a half of walking through the Neo Natal Unit
intensive care doors at the RCH, Adam was diagnosed with severe
Haemophilia A and rushed into the operating theatre to stop the
intracranial hemorrhage that had occurred (unbeknown to anyone)
at birth. Adam had two thirds of his body blood in his head and
one third in his body. He was in a critical condition. At that point
I wanted to be sure I fully understood what Haemophilia was and
how I could help Adam with his recovery. I studied every piece of
Haemophilia information that I could get my hands on (and I still
do).
Remarkably, from the moment Adam came out of theatre, he never
looked back. He really is a little fighter and his progress amazes
everyone. We were determined to provide Adam with every opportunity
for his development so with lots of love, positive attitude, physiotherapy
and external stimulation (often expertly provided by his sister
Emma); Adam has caught up in nearly all developmental areas. Adam
is still overcoming some balance issues associated with the bleeding
to the left side of his brain which may take twelve months to overcome.
Yes, there have been plenty of bruises and bumps and stress attacks
by Grant and I along the way and there will be more to come. Especially,
as we are learning the boundaries of Adam’s condition as far
as what may make him have a bleed etc. Quite amazingly, Adam hasn’t
had another trip to the hospital since his initial diagnosis. Yet
he is a typical boy and at times plays quite rough. We are still
working through the process of finding out how Adam came to have
Haemophilia.
Adam starts three-year-old preschool in the second term of this
year and he is testament to the saying that ‘miracles do happen’
and there is no limit as to his future.
From this experience Grant and I now understand what it means to
be an advocate for your child.
Meet some of our other support
groups...
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