Published by HFNSW
April 2015
Volume 30
Women’s
personnal Stories
World Haemophilia
Day 2015
Building a family
of support
“ I Have Special blood “
Australia
New Zealand Conference
Facing the future
together
About Us
HFNSW is a not for profit organisation that
provides support programs and advocacy for
the NSW bleeding disorders community, their
families and carers. While specialist doctors
and nurses provide world class medical and
social care for our members, we provide
everything else; community participation,
physical & emotional support, advocacy, and
financial assistance to members and their
families.
In this issue
p3 - Family Planning information session
p4 - Women’s personal stories: Haemophilia All in the Family
p5 - My ABDR update
p6 - Jye’s Story: “I have special blood”
p9 - AUS & NZ conference: Call for Abstract
HFNSW Commitee
P10 - Hepatitis C: Living Well
Prof Kevin Rickard, AM, RFD - PATRON
Dan Credazzi - President
Dr Garry Lynch - Vice-president/Treasurer
Leonie Mudge - RPA Haemophilia Social Worker
Craig Haran Paul Bedbrook Stacey Rohan -
P12 - AUS & NZ conference funding
HFNSW Staff
P14 - One Last Word from the President
Delphine Schwartzmann - Program Coordinator
[email protected]
P16 - World Haemophilia Day
Sam Deylami - Administrator
[email protected]
P12 - Youth Camp 2015: Expression of Interest
P13 - Thank You
P13 - Just Post-it
Enclosures
Contact Details
Suite 18, 255 Broadway, Glebe NSW 2037
P O Box 631 Broadway 2007
Ph: (02) 9249 7302 Fax: (02) 9249 7301
M: 0470 637 928
Web: www.hfnsw.org.au
Office: Monday to Friday Australia - New Zealand Conference
Information and Registration brochure.
Opinions expressed in Factor Matters do not necessarily reflect those of the Foundation or NSW Health. All information
is published in good faith but no responsibility can be accepted for inaccuracies that may result from events beyond our
control. HFNSW reserves the right to edit articles as it sees necessary. Materials supplied are for information purposes
only and are not to be used for diagnosis or treatment.
Factor Matters Volume 30
Page 2
Family Planning
information
&eDiscussion
S ssion
Family p
lanning
You are invited by The Haemophilia Foundation of New South Wales to an informal Family Planning
Information and Discussion session on April 29, 2015 at the Glebe Town Hall from 6pm to 8pm.
We will be welcoming Ron Fleischer, Genetic Counsellor at the Royal Prince Alfred Hospital, and Janan
Karatas, Genetic Counsellor at IVF Australia as guest speakers for this session.
Ron and Janan will be providing a review of the genetics of haemophilia and will discuss the reproductive options available to couples including the potential application of new genetic screening
technology.
If there are specific questions you would like Ron and Janan to answer during the session, please feel
free to send them to Delphine on [email protected] before Monday 27 April. Your questions
will be forwarded to them on a confidential basis.
Everyone is welcome! Light dinner and refreshments and will be served.
Location: Glebe Town Hall, 160 Saint Johns Road, Glebe NSW 2037
Please RSVP by Monday 27, April.
To RSVP online go to Eventbrite: https://hfnsw-family-planning.eventbrite.com.au
Or email/call Delphine Schwartzmann on [email protected] or 0292497302.
Factor Matters Volume 30
Page 3
Women’s personal Stories
HFA’s consultation with Australian women with bleeding disorders has highlighted how important it is for women to connect with each other by sharing their stories and realising that they
are not alone in their experiences – and that having a bleeding disorder is something that can
be talked about.
Below is an excerpt from Julia and Rebecca’s story. Read the full article and discover other
women’s stories on National Hamophilia or visit : www.haemophilia.org.au/bleedingdisorders/womens-personal-stories
Haemophilia - All in the Family
Julia and Rebecca and their families are members
of the Australian bleeding disorders community.
Two sisters, Julia and Rebecca, who both carry the
genetic alteration causing haemophilia, tell their
story of growing up and having families. Between
them they have four sons, all toddlers - and three
have haemophilia.
[…] Although both sisters carry the genetic alteration that causes haemophilia, they have each experienced this differently. Julia has never had any
bleeding symptoms, while Rebecca has always
bruised easily. She commented that generally this
was never a great problem for her. The only time
she ever had treatment product was when she was
given some recombinant factor VIII (8) coverage
for a knee reconstruction as a precaution. Bruising
too was not usually an issue - except when she was
about to start at a new school and didn’t know
anyone else there. “A few days before my first
day of Year 7, I had been jumping on my sister’s
bed and banged my eyebrow really hard and got
a bad black eye,” recalled Rebecca. “By the time
my first day of school came around the bruising
had spread to the other eye, so I had two eyes
in various shades of purple, black, brown, blue
and green. That was quite a challenge when I just
wanted to blend in with the other kids!” […]
filling and relatively pain-free life are really good
and once you realise this, it’s easier to accept. A lot
of people talk about the ‘guilt’ of passing haemophilia on in a family but I don’t view it like that. I
(and I think my family too) have been accepting of
haemophilia and remain hopeful that the recent
advances in treatment will continue.”[…]
Even after careful planning, diagnosis was challenging. “I do recall a sense of shock when we
found out our first baby had haemophilia,” commented Julia. “Perhaps it was simply that we always quietly hoped that the answer would be
‘no’ and the ‘yes’ immediately signalled a whole
new reality for us (even if it was one that we had
thought through in advance). […]
Ironically, having a child that doesn’t have haemophilia has added a little more complexity to Rebecca’s family. […] The recent World Congress in
Melbourne proved to be a great environment for
Rebecca to learn about the experiences of siblings
who don’t have haemophilia and strategies for
parents such as involving the siblings in treatment
and care, helping to prepare infusions, and other
ideas. […]
Excerpts from Julia and Rebecca’s story – December 2014
Both girls were very open with their partners
about haemophilia and their carrier status. And
both partners responded in a very positive way.
“For us my carrier status was not really an issue,”
said Julia. […]
“I think there’s a lot to be said for finding out as
much as you can,” remarked Julia. “Without an
understanding of haemophilia, the treatment options and what that means for the chance of living
an ‘almost normal’ life, haemophilia can be quite
daunting. But these days the prospects of a ful-
Factor Matters Volume 30
father
d their
n
a
a
i
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a , Ju
Rebecc
Page 4
My ABDR Update Update from HFA and National Blood Authority MyABDR Team - April 2015
What ’s new?
The latest release of MyABDR in January 2015
brought you more improvements and features:
Faster synchronisation
Bug fixes to help users better manage their inventory levels and copy forward routine prophylaxis treatments
You may also have noticed the new ABDR /
MyABDR Privacy Consent form that you will
probably have completed by now.
“Since the last update I have found MyABDR easier to
use - with better inventory control and speed to load
and update treatments. I think every update has been
creating a better – and great - tool for people to use . In
my family it has become a key part of our haemophilia
treatment and management.”
David, MyABDR User, Tasmania
Need Help?
Don’t forget your friendly MyABDR Support Team are available 24 hours a day, 7 days a week to help
you with any problems.
Finding it hard to make the time to ring? The team is available at any time, even outside business
hours, or send them an email and they will ring you back at a time that suits you.
T: 13 000 BLOOD (13 000 25663) E: [email protected]
For more information on MyABDR, visit www.haemophilia.org.au/myabdr.
Your friendly MyABDR Support Team, from left to right:
Vaughan , Petra, Andrew, Rebecca, Jo, Lachlan , Lyndsay
and Nathan .
Factor Matters Volume 30
Page 5
Jye’s Story
“I have Special Blood”
lots of tears and, apart from a bit of blood pooling in his mouth and a fat lip, there didn’t seem
to be much else wrong. We tried ice packs and icy
poles. After a while the bleeding seemed to subside and we managed to pinpoint a wound on his
gum near his front teeth.
e party
Life of th
For the rest of the evening the bleeding came and
went. We tried, to no avail, enticing him with lots
of icy cold goodies from the freezer. We wondered
why the bleeding hadn’t stopped yet.
Our son Jye was about a year and a half old when For the next day or two, the bleeding seemed to
we decided he needed a set of table and chairs subside. There were occasional bleeds, but only
all of his own. A place where he could exercise his minor, so we thought it was part of the natural
independence in eating, drawing and generally healing process. We figured the mouth was a
making huge messes.
tricky place for wounds to heal
His eyes lit up when Dadanyway. Every time we had a
dy brought home a small
little sneaky peek at his gum,
table and a pair of stools
we could barely see where the
and, after some quick asblood was coming from.
sembling (with dad’s help),
Jye got to work right away
In the early morning of day
and made himself acquaintthree, we woke up to a very
ed with the new addition.
unsettled little boy. I went in
Little did we know that this
to check on him, keeping the
“new addition” to his play
lights off as not to stimulate
space would soon reveal to
him too much. Jye’s pyjamas
us something about our son
and pillow felt damp. I immebleed
that we had never imagined
th
ou
m
of
3
diately thought he was feelDay
possible…. something that
ing unwell and had perhaps
absolutely shook our world.
vomited. I switched on the
Jye is your typical, energetic little boy who loves
running around at the park, doing flips on the bed
and jumping off the couch. As he began to walk,
he sported many bumps and bruises. “It’s part and
parcel of being a toddler” we thought, and always
encouraged him to “get up” after a fall or “keep
going” after a stumble.
It wasn’t until, one afternoon in July 2014, when a
chain of events were to change the course of our
lives forever.
As Jye went to have a seat at his table, the chair
gave way and he fell flat on his face. There were
Factor Matters Volume 30
light and was horrified at the scene. There was
blood everywhere and seeping out of his mouth.
I cleaned him up as best as I could, dressed him in
clean clothes and brought him into our bed. “I’ll
deal with the blood stained sheets in the morning, and, oh, I better give him a dose of Nurofen”.
In hindsight I don’t know why I felt the need to
give him Nurofen. I guess when you see that much
blood and your child is screaming and it’s three
o’clock in the morning, you feel like that’s the only
logical solution. Plus, it was the only medication
Jye would stomach.
That day, I took Jye to the medical centre. “Maybe
Page 6
he needed stitches?” The bleeding had subsided
at this point, so by the time we got called upon by
the doctor, Jye was jumping around, laughing and
carrying on. The doctor must have thought I was
mad! I tried to explain the bleeding was worse at
night but Jye wasn’t putting on a very convincing performance! The doctor examined him and
said he had torn his frenulum, the piece of skin
between the lip and gum. He said the tear was so
tiny that it wouldn’t warrant a stitch. The doctor
advised me to use compression over the lip and if
he was still bleeding in a few days to bring him
back for a reassessment.
As the events of the night before faded away into
the distance, I began to feel like I was overreacting. We carried on with our day. I’d find the odd
trail of blood where Jye had been. “Surely the
bleeding would stop soon?”
That night was a repeat of the night before. Not
much sleep was had. We tried to keep him comfortable by mopping away the blood from his
mouth as he slept. Blood would trickle down his
chin and cheeks. We would wake to the sounds
of coughing and gurgling blood. And of course,
I’d administer another dose of Nurofen, because
I didn’t know what else to do. That morning, all
three of us covered in blood, I decided to take him
to the local hospital. Again, by the time we arrived, Jye was as jovial as ever, barely showing any
signs of a bleed. I felt like I was losing my mind.
“Am I imagining this?”
Once again after observation, I was told to apply
regular pressure to the site and give him plenty
of icy poles. (This advice was starting to frustrate
me!) Clearly applying pressure to a squirming toddler’s mouth was no easy feat. “Does he need
stitches?” I prompted. “Not at all. It’s a tiny little
tear.” The doctor smiled at me sympathetically
but deep down I knew she was thinking… “Here’s
another hypochondriac mother.”
The night that followed was another long and
desperate one. And once again I fed him Nurofen.
At the crack of dawn I sat in bed, watching Jye
sleep, wiping away the blood that flowed steadily
from the corners of his mouth. I remember feeling
so helpless, crying. I had an important day scheduled at work the next day. I was feeling stressed
about that too. “He definitely needs stitches!!!”
I’m taking him to the dentist as soon as I finish
work today. They’ll surely stitch him up!” I didn’t
know what else to do, so I reached for my phone
and took a few photos of Jye sleeping amidst
what looked like a murder scene.
Factor Matters Volume 30
ye was
l when J
ta
i
p
s
o
H
ilia
wick
haemoph
th
A t Rand
i
w
d
gnose
first dia
I called the paediatric dentist and asked if they
could see my son. “It’s urgent. I think he needs
stitches.” But to my dismay they were fully
booked. “So what should I do?” I was becoming
increasingly agitated. The nurse sensed my frustration and suggested that we go to the children’s
hospital. “They have a dentist there if it’s an emergency.” I didn’t realise it at the time, but that was
definitely the best advice we received so far.
When I arrived at the emergency department of
Randwick Children’s Hospital I was greeted by a
sea of friendly administration and nursing staff.
Jye, right on cue, stops bleeding and plays energetically with every single toy in the waiting
room. Again, the nurses wonder what I am even
doing there. I couldn’t bear the thought of being
sent home again with no answers. So I quickly retrieved the photos I had taken in the morning of
Jye sleeping, covered in blood. The nurses were
horrified. They quickly checked his vitals and he
was sent inside. In between seeing doctors and
getting blood tests done, we waited.. for hours. I
was so positively sure that they were going to suture him up and send us on our merry way home.
I was asked on numerous occasions if I was a heavy
bleeder. “No I don’t believe so.” I honestly didn’t
know where this was going. The doctor called us
in and said that the blood tests had detected a
deficiency. “We need to keep Jye in for further
Page 7
thing we could about Haemophilia and what it
meant for our family and for Jye’s future. I also
learnt to never, ever administer Nurofen to my
son again!
We are now in a place where we feel so thankful for what we have. Jye is being cared for by
an amazing team of doctors and nurses. Our visits
to hospital have always been positive experiences
and we are truly lucky to be living in a country
that supports us so much. We are so grateful that
Jye is growing up in an era where people living
with blood disorders are experiencing a quality of
life that may not have been the case in years gone
by.
mmy &
Passing the time with Mu
Daddy selfies
testing”. Panic set in. I was still in my work gear. I
hadn’t planned for an overnight stay in hospital.
“What about stitches?” But I knew at that point
there was an underlying issue.
“What could possibly be wrong?” In one and a
half years Jye always looked and behaved like a
“normal” kid.
We know that there will be challenges along the
way, but for now, we can’t help smiling every
time Jye proudly tells people that he has “special
blood”.
Raquel and Jeffrey Correia
The night was a blur. We were wheeled to the
ward in the middle of the night. Our beautiful
boy was coping so much better than I was. I remember feeling utterly confused, coupled with
complete helplessness.
Night turned into day and we anxiously waited
for some answers. After what felt like an eternity, a team of doctors and nurses asked to have a
word with us. This moment was completely surreal. We were escorted to an empty room and asked
to “have a seat”. That’s never a good thing. “Your
son’s blood results have shown that he only has
3% clotting factor VIII present in his blood… this
means his blood has trouble clotting when he has
a bleed… Your son has a blood disorder known as
Haemophilia A.” I’m sure there were other explanations in between. But that’s all I remember. We
felt numb. We felt as if the world had suddenly
stopped spinning.
Life is go
od!!
Needless to say, hours turned into days, and days
turned into weeks and slowly life went back to
some sort of normality. Disbelief and denial gave
way to acceptance, anger transformed into gratitude and grief fuelled the desire to learn every-
Factor Matters Volume 30
Page 8
Save the Date!
Call for Abstracts - Closing Date: Friday 5 June 2015
HFA is calling for abstracts for presentations to be included in the main conference program or to be
included as a poster in the Poster Exhibition.
We encourage abstracts relevant to clinical practice and care, laboratory science, research, policy or
living with bleeding disorders or treatment complications. There will be prizes for the Best Abstract,
and the Best Poster.
For more information about the conference visit www.haemophilia.org.au/conferences
SUBMIT A POSTER ABSTRACT
GUIDELINES AND FURTHER INFORMATION
We encourage you to submit an abstract for a free
paper or poster.
Abstract topics should be relevant to the following
areas:
•clinical practice, treatment & care
•laboratory science
•research
•policy & programs
•living with bleeding disorders
•The abstract must be submitted by 5 June 2015
•Consent must be obtained from co-authors
•Abstract submissions must be made on the
submission form
•Do not include photographs on the abstract
•Abstracts will be reviewed by the Conference
Program Committee before acceptance
•Authors will be notified if abstract has been
accepted in July 2015
•Posters must be no larger than 1.5m high x 1.2m
wide and suitable for hanging with velcro or push
pins.
•Print size should be readable from distance of 3-5
feet.
CONFERENCE REGISTRATION
Earlybird registration closes 31 July 2015. For
more information visit www.haemophilia.org.au/
conferences or contact HFA on 03 98857800 or
[email protected]
ABSTRACT SUBMISSION FORM
Download and fill out the abstract submission
form on: http://www.haemophilia.org.au/
eventsandawards/abstracts-2
Factor Matters Volume 30
Page 9
Hepatitis C: living well
This article has been reprinted with premission from Hepatitis NSW (2015) - You can order the free Guide to healthy living
booklet on Hepatitis NSW resource library : http://www.hep.org.au/resource-library/
Hepatitis NSW has also just released the latest edition of their What You Need To Know booklet. You can view the booklet
online on http://issuu.com/hepatitisnsw/docs/wyntk or call their infoline (1800 803 990) to request a copy. Health workers
in NSW can order free supplies of the booklet here: http://www.hep.org.au/resource-library/
There are lots of things you can do to manage your hep C and look after your liver.
Here you’ll find heaps of info to help you with things like diet, sleep, exercise,
alcohol and other drugs:
DIET
There are simple changes you can make to your diet and eating habits to ensure you’re looking
after your liver. Here are some things you can do:
*
*
*
*
*
Try to eat smaller meals that are easier for you to digest. Avoid eating food that is hard for your
liver to process. This includes food that is high in saturated fat like fast food, fried foods and food
that has a lot of salt in it. Tinned and frozen vegetables and meals can be a good way of saving
time, energy and money, but because most processed food like tinned vegetables or soups have
lots of salt, look for the low-salt and no added salt options.
Eat bitter foods like rocket lettuce before main meals to improve digestion, or use lemon juice on
salad leaves to start your meal. Bitter and sour foods help prompt your system to release digestive
juices that help you digest food.
For the first 30 minutes after eating try to remain upright – either by sitting or walking around.
Lying down can make it harder for your body to digest food and increases the chance that you’ll
feel nauseous.
Like anyone else try to eat two serves of fruit and five serves of vegetables every day – these
foods will help keep your liver as healthy as possible. Check out “go for 2&5 website” http://www.
gofor2and5.com.au/ for information on serving sizes.
Eating a wide variety of foods in the right balance will help improve your health. Dieticians suggest
avoiding restrictive or cleansing diets as there is little clinical or biological basis to support them.
Exercise
*
Exercise is an important part of living well with hep C. Maintaining a healthy body weight and
avoiding diabetes are both going to mean you are giving your liver the best chance at staying
healthy.
*
Try to take some moderate exercise early in the day. This can give you an energy boost and it helps
your system to process your food. Find something that you enjoy doing so that exercise isn’t a
chore: walk a dog (even your neighbour’s), use a bicycle rather than catching the bus, or get off
the bus a stop or two before your destination and walk the rest of the way.
*
Avoid exercising just before bedtime as this energy boost might make it difficult to get to sleep.
Factor Matters Volume 30
Page 10
Hepatitis C: living well (cont.)
Alcohol
*
If you’re living with hep C then the amount of alcohol that you drink can have a serious impact
on your liver health. If you drink alcohol regularly your risk of developing liver damage is higher
than that of someone who doesn’t drink. This is especially true if you regularly drink more than
the amount listed in the Australian Alcohol Guidelines . These Guidelines state that for people
who do not have a liver problem like hep C, drinking no more than two standard drinks on any
day reduces the lifetime risk of harm from alcohol-related disease or injury (a standard drink is
one schooner of light beer, one middy of full strength beer, one standard glass of wine or one
nip of spirits).
*
If you have hep C it’s a good idea to have no more than two drinks a day and if possible less than
this, because your liver needs more care in order to keep your liver functioning as well as possible.
*
*
Here are some ideas that you can use to reduce the impact of alcohol on your liver:
• Set limits for yourself and stick to them
• Start with non-alcoholic drinks and alternate with alcoholic drinks
• Drink slowly
• Try drinks with a lower alcohol content
• Eat before or whilst you are drinking
• If you participate in rounds of drinks try to include some non-alcoholic drinks
• Try to have at least 3 days a week on which you don’t drink any alcohol.
Controlling alcohol intake is an important first step to reducing the risk of serious liver damage.
If you undertake hep C treatment it is likely your treating doctor will recommend that you drink
no alcohol at all in order to maximise your chance of treatment success.
If you do drink alcohol regularly (more than once or twice a week) then try to make sure you’re
getting enough vitamin B in your diet, as alcohol reduces the amount of vitamin B in your system.
You can get B vitamins from whole unprocessed foods. You need B vitamins to help maintain
good mental and physical health.
Drugs
*
*
Different drugs have different effects on your health. If you are living with hep C then it’s a good
idea to find out what you’re taking and how it might affect your liver.
Some recent research shows that marijuana (pot, weed, gunja, hash) can damage your liver in a
similar way to alcohol. If you smoke marijuana regularly, then reducing the amount you smoke or
stopping smoking will improve your liver health.
*
Other drugs such as ice (aka crystal, methamphetamine, meth, tina) have a big effect on your
immune system. If you use ice occasionally or regularly try to make sure you are also doing things
to help look after your immune system. Things like eating some fresh fruit and vegetables every
day, drinking plenty of water and doing some light exercise for twenty minutes a few times a
week will all help.
*
If you use heroin or other opioids (like oxycodone) then keep in mind that over time these drugs
can damage your liver and kidneys, so look into ways that you can look after your liver and
kidneys (drinking plenty of water is a good start).
For more information around drug use check out NUAA – www.nuaa.org.au
Factor Matters Volume 30
Page 11
Australia New Zealand Conference: Funding
Ear
ly b
ird
re
31 gistr
july atio
201 n cl
ose
5
s
HFNSW would like to enable as many members as possible to attend the Australia New Zealand
Conference on the Gold Coast and will help you cover some of the costs of attendance.
Your foundation will be able to provide some funding to cover the conference registration costs.
for more information and to express you interest in receiving some funding please contact the
office on [email protected] or call 0292497302
Youth Camp 2015
est
r
e
t
n
I
f
n o
Expressio
HFNSW is looking at options for a Youth Camp
that would take place in June 2015.
This camp will be held over one day in Sydney
area.
The day out will be an “adventure” dedicated
to our youth members, boys and girls, aged 13
to 30.
We will also be counting on our Youth Leaders
to support and mentor the younger attendants.
If you are interested, please send your contact details to Delphine Schwartzmann on :
[email protected] and
we’ll get in touch with you once the programme and details are confirmed.
Factor Matters Volume 30
Page 12
Thank you
Support
rFoundation!
u
o
Y
We know there are many worthy charities out in
the world, but if you’re reading this, that means
that ours is special to you and yours.
Visit the donation or membership pages on the
Haemophilia Foundation NSW website :
http://hfnsw.org.au/
Our funding from NSW Health doesn’t cover everything we do at your Foundation. It’s always covered about 80% of our annual activity. So we’ve
always depended on donations from members,
HFA and fundraising events such as BBQ’s, walks
and rides.
Payment Details
Please make cheques/money orders payable to:
Haemophilia Foundation NSW Inc. and send to
Haemophilia Foundation NSW, PO Box 631,
Broadway NSW 2007
So if you haven’t already made a donation this
year, please consider it. Even if you’re just rounding up your $11 membership fee to $20, this will
help.
As a tax deduction, your donation can offset your
own tax liability, reducing the actual cost to you,
but passing on full value to HFNSW. We’ll send you
a receipt. Try the secure online donation feature
on our website. It’s via the Commonwealth Bank,
and we can track and receipt from that system too.
Be sure to fill out all the information fields.
EFT Payment
BSB: 062 204
Account number: 00902590
Account Name: Haemophilia Foundation NSW
Please include your name in the comments field
and email your receipt number to
[email protected]
Thank you for your considered support.
Just Post-it
15
0
Youth Camp 2
rest
Express your inte
on
now to Delphine
.org.au
dinator@hfnsw
coor
ANZ Ha
emophil
ia
Confere
nce on
the Gold
Coast
early bird re
gistration
closes
31 July 2015
World
Haemophilia Day
Save the date
17 April 2015
Factor Matters Volume 30
ct
ANZ Abstra
submission
deadline
e
anged hom
Recently ch
one or
address, ph
email?
ct
new conta
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details to S
sw.org.au
admin@hfn
5
5 June 201
Page 13
One last word from the president
Wasabi Grapes
in the car. What turned out to
be an 800 kg branch from the
tree next door fell on our front
courtyard. As SES activity goes,
we didn’t warrant a news crew,
but it was a great chance to
meet more neighbours. Forced
outdoors by the loud bang and
the afternoon’s loss of power.
And luckily, yes, the powerlines
caught the massive part. AusGrid was on site in 30 minutes
and the whole thing was swept
and wrapped up in five hours.
Last week, I got a call at the office, ‘the big tree next door fell,
it made a huge bang, its hanging on the powerlines!”. It was
April 1st and I had been waiting for this one. Then I got a
photo on my mobile and got
And so it goes with disasters.
Small and large, they have an
impact and we do our best to
cope. I must admit, when I
watch the evening news, and
all the misery and suffering du
jour front and centre in my liv-
Dan Credazzi -
ing room, it does provide a dose
of perspective. Things could be
worse. And that’s usually the
case. I remember the saying, ‘I
had the blues because I had no
shoes, but while walking on the
street, I met a man with no feet’.
It’s something to sing to yourself when you’re chugging lemonade to wash down a wasabi
grape. Our son’s brilliant idea
for an April Fool’s joke. According to him, you use an empty syringe, squirt in the wasabi, and
give it to your Dad when he gets
home from work…
The business centre where we work from
will be closing down on June 20, 2015.
HFNSW
on
the
We are still exploring different options
for our new office. You will be informed
of our new contact details as soon as we
find a new home!
until further notice you can always use
our PO BOX:
HFNSW
PO BOX 631
Broadway NSW 2007
move
Factor Matters Volume 30
Page 14
HAEMOPHILIA CENTRES
HFNSW MEMBER SERVICE
Membership $11 (inc. GST)
Kids Factor Zone
The Children’s Hospital at Westmead
General: (02) 9845 0000
Robyn Shoemark (Nurse)-- quote Pager no. 7052
[email protected]
Ady Woods (Nurse)-- quote Pager no. 6273
[email protected]
Sydney Children’s Hospital Randwick
Haematology
C2 North, Sydney Childrens Hospital
High St. Randwick NSW 2031
Phone: (02) 93821240
Gráinne Dunne (Nurse)
[email protected]
Kate Lenthen (Children’s Social Worker)
[email protected]
Royal Prince Alfred Hospital
Haemophilia Treatment Centre
RPA, Missenden Road
Camperdown NSW 2050
Leonie Mudge (Social Worker)--(02)9515 8385
[email protected]
Stephen Matthews (Nurse)
[email protected]
Phone: (02) 9515 7013
Calvary Mater Newcastle
Haemotology Department
Corner of Edith & Platt Streets
Waratah, NSW 2298
Phone: (02) 4921 1211
William Whitbread-Brown (Nurse)
[email protected]
Melissa Walker (Bleeding Disorders Social Worker)
[email protected]
Dale Rodney (Nurse)
[email protected]
HFNSW Annual Family Camp: free of charge to
people with bleeding disorders and their families
Newsletter: Your quarterly newsletter from HFNSW
and HFA offers information and details of upcoming
events
Financial Assisstance: Medic alert, shoe rebate,
travel, education &training, grants.
Information and Support:
-Education and assistance to members with bleeding
disorders and those who also have HIV
-Provide tutors and entertainment to members who
might require extended hospitalisation
-Information and social activities for members and
their families
-Rural visits to areas of NSW where there are no
specialists
JOIN THE COMMITTEE
HFNSW is looking for new talent to join our Management Committee. Free training and induction is available to all new Committee members. If you want to
have a say in how the Foundation delivers its service
and shapes its future ,please contact the office at
[email protected]
2015 Committee meetings
HFNSW Foundation office, Suite 18, 255 the Broadway, Glebe (2 hour free parking at the Broadway
Shopping Centre) All committe meetings are on a
Tuesday evening and commence at 6.00pm
April 21
May 19
June 23
July 21
August 18
September 22
October 20
November 17
All are welcome to attend!
Factor Matters Volume 30
Page 15
6.9 million people have a bleeding disorder
75 per cent of them do not know it
ON AND BEFORE WORLD HEMOPHILIA DAY
• Follow the World Federation of Hemophilia’s (WFH) Facebook page at www.facebook.com/wfhemophilia,
and like and share the infographics we will be posting leading up to World Hemophilia Day.
• Participate in the WFH Family Tree online project by submitting photos of your family or families of support.
Visit www.wfh.org/whd after January 31, 2015 to learn how.
• Share your own photos, and those posted by others, on the WFH Facebook page with your online social media
network and encourage members of your community to do the same.
• Participate in the online discussion on Facebook of each of the issues that the infographics present by commenting on the posts. This will encourage an online global discussion about living with a bleeding disorder.
Encourage your friends and family to comment, share, and like the posts.
• Support the work of the WFH by becoming a member or giving the gift of membership. Visit www.wfh.org/
giftofmembership for more information.
• Place the World Hemophilia Day logo on your website and provide a link to www.wfh.org/whd you can find
the logo at www.wfh.org/whd or contact Vanessa Herrick at [email protected].
• Download the World Hemophilia Day poster from www.wfh.org/whd and put it somewhere where others will
see it.
• Update your Facebook status with your plans for World Hemophilia Day and encourage your friends to do
the same.
• Tweet about your plans for World Hemophilia Day, and share the infographics using the #WorldHemoDay.
• Light it red! Light a lamp in your home, office or even a local landmark red to honor all those with a bleeding
disorder and raise awareness for World Hemophilia Day. Share your photos on social media using #beyondblood
• Host a Global Feast activity! It doesn’t have to be a dinner; you could plan a walk-athon, or another social
event, to raise awareness about bleeding disorders in your community. Go to www.wfh.org/globalfeast for details.
Factor Matters Volume 30