meet our support groups
support groups directory | resources for support groups | new support groups
Thalassaemia Society of Victoria (TSV)
333 Waverley Road, Mount Waverley VIC 3149
“The TSV is committed to the promotion
of knowledge and understanding of thalassaemia and related conditions.”
About TSV
TSV provides information and community education about thalassaemia
and other genetic blood disorders. TSV also raises funds for thalassaemia
research, puts people in touch with others and provides an informed
point of contact on topics related to thalassaemia.
The web
site contains fact sheets about the different types of thalassaemia.
It also contains a link to a thalassaemia chat room, and an email
bulletin list to join.
TSV is currently working towards having a new treatment product
listed under the PBS scheme. This will help make the product an
affordable treatment option.
History of TSV
TSV was started in 1976 by doctors to raise funds to purchase
treating equipment for the hospital to give to patients. The inaugural
meeting was held on 10th March 1976.
The group has witnessed a significant change in treatment in that
time. TSV celebrates its 30th anniversary this year.
About Thalassaemia
Thalassaemia is the most common inherited genetic condition worldwide.
It is a blood disorder affecting haemoglobin production in the red
cells. (Haemoglobin is a protein in the blood containing iron which
is important in carrying oxygen around the body.) The result of
thalassaemia is lifelong anaemia.
Around 160 Victorians have Thalassaemia Major requiring treatment,
while many more people are healthy “carriers” of the
condition.
Treatment
Treatment involves blood transfusions and daily subcutaneous injections
to remove excess iron. The injections take approximately 10 hours
and the infusion pump is generally worn overnight, although it can
be worn underneath clothing.
While the injections are inconvenient, they are a significant improvement
in treatment from thirty years ago, when a person with thalassaemia
was unlikely to live long enough to become a teenager. There is
hope that a new tablet will be able to replace the injections very
soon.
Sotirios’s Story:
Living with Thalassaemia
I was born in Melbourne, to Greek Australian parents. Part of
my heritage included thalassaemia. My mother had heard of thalassaemia
in Greece. Later, when I was appearing rather ill and anaemic as
a four year old, it was diagnosed at the hospital.
An illness that made me feel very tired as a child, unable to walk
long distances or to play with the energy of other children, soon
provided other ‘nightmares’ as part of the treatment.
Around five years old, I began having regular blood transfusions
at hospital. These varied from fortnightly to eight weekly. Due
to the lack of volume of blood in my body and the weak development
of my veins, transfusions were particularly traumatic for me as
a child. The painful search for a suitable vein to put the drip
into and the stays in hospital became part of the experience of
living with thalassaemia.
Around seven years old, I had my spleen removed as it was using
too much of my valuable red cells (it was trying to do its job of
removing the sick thalassaemic red cells and had become bloated
in its desperate drive to destroy them). Without my spleen my immune
system was further compromised and penicillin was prescribed. To
this day, however, I have not suffered a major infection other than
the regular cold.
Regular transfusions now provided another challenge. The extra
iron left from all those blood transfusions could not be removed
by my body and was beginning to store itself in my vital organs.
Desferal was prescribed to be administered as a single intra-muscular
injection daily. This became another painful daily reminder of thalassaemia.
The Royal District Nurse would come to my school on weekdays and
I would be called to have the injection. Other children saw this
and it added to their curiosity. I did not reveal to them what I
had to live with.
During my early teen years the Desferal injection was replaced
by a more effective administration regime. Using a device called
a slow-infusion pump, I now administered the Desferal injection
myself. The pump administered the injection over a ten-hour period
(overnight). Of course, as a teenager this meant a severely curtailed
nightlife. I did not want to have this thing strapped to me while
going out. I didn’t want people to see me as different or
pity me, and I did not want to deal with their questions, no matter
how well intentioned.
Diet was not a real issue for me apart from abstaining from high-iron
foods like lentils, which I did not care too much for. As long as
I kept up with regular blood transfusions and using my pump, I could
lead a normal life. But using the pump is painful physically and
a hassle socially. If I was not vigilant in its use I was warned
that other complications could arise such as heart and liver problems,
diabetes and eventually death. Ironically, the transfusions would
kill me. It’s a life-long condition but one that is not impossible
to deal with. Excellent support at hospital by people that I now
have known for over 25 years means I have an extended family to
support me.
Plans for the future need to be realistic. In finding a life partner
I have to be conscious of the possibility that thalassaemia could
be passed on to my children and its severity depends on my partner’s
carrier status.
I was asked once whether I regret having been born with this condition.
I sincerely say that I would live through it all again because I
have learned so much and it has made me a stronger-willed person.
Reprinted with kind permission from TSV. Thanks, Sotirios,
for sharing your story.
Meet some of our other support groups...
|
_01.gif)
_02.gif)
_03.gif)
_04.gif){kind=small}
_05.gif)
_07.gif){kind=small}
_09.gif){kind=small}
