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ACTIVATED
Newsletter of Haemophilia Foundation Australian Capital Territory
PATRON March 2020
Dr Richard Pembrey AM, Newsletter
MB BS, MD, FRACP, FRCPA Vol. 36 No. 1
President’s Report
After a summer of disaster, fire donor screening procedures in can-do attitude and efficient
and smoke, damaging winds Australia to prevent individuals manner are welcome.
and hail, it’s a welcome relief to who show disease symptoms
get some milder weather, and typical of a coronavirus infection, ….As Life is Hectic
some rain (which my garden including COVID-19, are routinely
On another personal matter, the
really needed). in place, and will continue to be
birth of our fifth child (and fourth
reviewed. There is no current
boy) for Julia and I in November,
COVID-19 & Blood Donations evidence suggesting coronavirus
Giovanni Federico Damiani,
is transmissible by blood
2020 is shaping up to be a busy brought another new member to
transfusion and other similar
year, and an interesting one both not only our household, but to
respiratory viruses are not known
politically and economically. The the HFACT community as well.
to be transmitted by blood. Virus
onset and spread of the Tests taken at birth from a small
detection in the blood has only
Coronavirus (COVID-19) has blood sample taken from
been detected in a relatively
been concerning, and in Giovanni confirmed he has
small proportion of unwell
response to a question about the haemophilia A, with levels
patients who would not be
safety of clotting factor indicating moderate severity, just
eligible to donate blood. Further,
treatments made from human like his three older brothers. Four
dry heat treatment, solvent
blood plasma in the context of boys with haemophilia! Life in
detergent and other steps used
Coronavirus, HFA released a the Damiani household is hectic.
in the fractionation process
statement on its website on 27
February.
inactivate and remove viruses”.
Claude Damiani
The full statement is on the HFA President, HFACT
It notes that “Lifeblood (formerly
website:
the Australian Red Cross Blood
haemophilia.org.au/publications
Service) has confirmed that
/news/coronavirus
Contents Learning to Treat at Home….
President’s Report .............................. 1 Personally, I’ve been going
Counselling Services 2020 ............... 2 through prophylaxis training at Breaking News
World Haemophilia Day 2020 ......... 2 the Canberra Hospital, under the
Women’s Wisdom High Tea ........... 3 watchful eye of Jayne Treagust, Readers of the Canberra Times
Introduction from HTC Nurse ......... 4 the new HTC haemophilia nurse. may have noticed an article on
Men’s Business Breakfast ................. 4 Jayne has been very patient with Sunday March 1st, announcing
Have You Been PROBED Yet? ......... 5 me as I’ve sought to “get it right”, the February 29th birth of a third
ANU Medical School Teaching learning about the safety steps baby boy for Rebecca Minty and
Sessions .................................................. 5 and importance of proper Jim Leitch, Julia’s sister and broth-
Multidisciplinary Review Clinic preparation, as well as er-in-law. Mother and baby are
Dates, First Half 2020 ........................ 6 technique, with an aim to soon doing well.
Getting Older Project Update ........ 6 graduate to practice injecting A photograph, by Canberra Times
WFH 2020 World Congress on myself and another guinea photographer Elesa Kurtz, of the
- HFACT Grant Available .................. 7 pig (the wife), before I’m in a whole family, including doting
Wanted - Newsletter Editor ............ 8 position to ease the burden of brothers Zachary and Elliott can
Dates for Your Diary .......................... 8 prophylaxis undertaken by Julia be found using this shortened link:
Haemophilia Contacts ....................... 8 on our second eldest boy
Our Mission .......................................... 8 Emiliano. I’ve been very bit.do/ct-leap-year-births
ACT Health Acknowledgement ...... 8 impressed with Jayne, as her
ACTIVATED
HAEMOPHILIA FOUNDATION
AUSTRALIAN CAPITAL TERRITORY
Counselling Services 2020
Services at No Charge bleed of a student, managing clients in their lunch break or af-
grief, maintaining healthy rela- ter work, at a local coffee shop
I am employed for 13 hours a
tionships and more. I am availa- or in their private homes. I visit the
week by the Haemophilia Foun-
ble to anyone in the ACT and Canberra Hospital every Thurs-
dation ACT and my role is funded
near region affected by a herita- day for 4 hours if anyone wants
by an ACT Health Directorate
ble bleeding disorder, and their to meet me at the hospital.
grant, so I do not charge clients
families.
for appointments. Most appointments are pre ar-
I have 15 years experience in ranged by text, phone or email.
I work across a variety of issues
counselling and am a former reg- My contact details are:
for example: discussions about
istered nurse. Clients can self re-
child behaviour, access to NDIS, E: counsellor@hfact.org.au or
fer.
liaison with health professionals, M: 0409 830 472.
health implications for people Availability and Locations
affected by bleeding disorders,
My availability is Monday, Tues- Kathryn Body
discussions with school and child
day and Thursday. I can meet Counsellor, HFACT
care centres about managing a
World Haemophilia Day 2020
GET+INVOLVED
of World Haemophilia Day, join us
for a family picnic at 12.30 on
Sunday the 19th of April at Nara Light It Up Red!
Peace Park, Yarralumla.
“The theme of World Haemophil- Landmarks and monuments in
ia Day in 2020 is Australia and around the world
“Get+involved”.Whether you are will support World Haemophilia
a patient, a family member or Day by changing their lighting
caregiver, a corporate partner, a red on April 17.
volunteer, or a healthcare pro-
vider, we want to encourage In Canberra, HFA has negotiated
you to help increase the aware- with Telstra Tower and the Royal
World Haemophilia Day ness of inherited bleeding disor- Australian Mint to participate in
Every April 17 World Haemophilia ders and the need to make ac- Light It Up Red on Friday April 17,
Day is recognised worldwide to cess to adequate care possible 2020.
increase awareness of haemo- everywhere in the world.”
philia and other inherited bleed- Show your support on the night,
In the spirit of getting involved we
ing disorders. This is a critical ef- and post photos on HFA’s Face-
will be hosting a range of activi-
fort since with increased aware- book or Twitter pages of you and
ties, from outdoor games and
ness comes better diagnosis and your friends at the landmark.
sports to fishing, or simply sit back
access to care for the millions #WHD2020
and catch up with your fellow
who remain without treatment.
community members. HFA on Facebook
World Haemophilia Day was
Bring along a picnic lunch, some- facebook.com/
started in 1989 by the World Fed-
thing to sit on, and look out for HaemophiliaFoundationAustralia.
eration of Hemophilia (WFH)
the red tablecloths. Please RSVP
which chose to bring the com- HFA on Twitter
to secretary@hfact.org.au or
munity together on April 17 in twitter.com/Haemophilia_Au
0434 903 463 by April 13th.
honour of WFH founder Frank WFH on Facebook
Schnabel’s birthday.
Shauna Adams facebook.com/wfhemophilia
HFACT WHD Family Picnic
Secretary, HFACT
To celebrate the 30th anniversary
Page 2 March 2020
HAEMOPHILIA FOUNDATION
AUSTRALIAN CAPITAL TERRITORY ACTIVATED
Women’s Wisdom High Tea
What is Women’s Wisdom?
The HFACT women’s group is there to provide
support to women living with a bleeding disorder
or supporting someone with a bleeding disorder.
We aim to provide the opportunity for people to
meet with others who may have the same chal-
lenges. All are welcome – women with a bleed-
ing disorder, carriers, partners, sisters, daughters,
carers, grandmothers.
We generally get together around food or drink,
sometimes with a guest speaker or theme and
sometimes just for a relaxed chat.
High Tea
The first function for 2020 is High Tea at the Hyatt
Hotel, Canberra at 2.30pm on Saturday 28th
March. This will be subsidised by HFACT for finan-
cial members ($68 for non-members or members
who are not financial) *. This special afternoon
tea will provide an excellent opportunity to meet
and mix with women in the bleeding disorders
community in Canberra and surrounds.
Numbers are limited, so please RSVP to Jenny
(0410 543 086 or treasurer@hfact.org.au) or
Kathryn (0409 830 472 or
counsellor@hfact.org.au) as soon as possible but
by March 20th at the latest. Due to the cost of
the High Tea we are asking for a deposit of $10
to secure your seat and as your contribution to
the cost. (See below for banking details)
Jenny Lees
Direct deposit details
WESTPAC
BSB number: 032-778
Account number: 440919
Account name: Haemophilia Foundation ACT
Incorporated
Please include your surname and the words
‘HighTea’ in the reference or payee field.
* annual membership is $20.00
Join at hfact.org.au/join
March 2020 Page 3
ACTIVATED
HAEMOPHILIA FOUNDATION
AUSTRALIAN CAPITAL TERRITORY
Introduction from Canberra HTC Nurse
Firstly, I would like to consolidated that knowledge in Canberra. My husband is Steve
acknowledge the wonderful wel- Alice Springs (it is COLD in Can- and he is the reason we have
come and support that I have berra ☺ ). I have also worked moved to Canberra; you
received from the haemophilia guessed it – for his job.
in Toowoomba and Geraldton as
community here in Canberra. I
a breast care nurse and chemo-
feel very honoured to be working I hope to have a long relation-
therapy nurse. I am enjoying the
with such an awesome group of ship with you all and look forward
challenge of working with peo-
people. The haemophilia nurses to meeting everyone. Once
ple who have a chronic condi-
working in other states through- again thank you for your warm
tion that is non-malignant and
out Australia have also been very welcome.
will endeavour to help and an-
welcoming. I was fortunate
swer all questions as best as I
enough to have been given the
opportunity to spend two days
can. If I don’t know the answer I
can always find out!
Jayne Treagust
with Robyn Shoemark, the CNC
at The Children’s Hospital in West-
On a personal note – I am mar- Advanced Practice Nurse,
mead on Monday 24th and Tues-
ried and have three children. My Haemophilia and Bleeding
day 25th February.
eldest child is Tom, he lives in Disorders,
Perth and will be 30 in April Haematology Department,
I come from a 40 year back-
(where did the time go!!). Emily is Canberra Hospital.
ground of Haematolo-
living in Darwin and Claire is in
gy/Oncology nursing; having
Townsville – they both tell me
trained in Adelaide, extended
how lovely and warm they are
my knowledge at The Royal
when we are freezing here in
Marsden Hospital in England and
Men’s Business - Breakfast in February
A perfect late summer morning
on 22 February greeted a small
group of HFACT community
members enjoying breakfast and
each other’s company.
It was certainly fortunate that a
booking was made as Double
Shot café in Deakin was packed
to the rafters as the saying goes.
A steady stream of customers
came and went and getting a
table for breakfast without a
booking meant long wait times,
and understandably why.
The food was delicious, but the
company even better. For those
who haven’t been to a men’s
business event before, I encour-
age you to come along next
time as it’s a great opportunity to
meet others in the community, HFACT members gathered at Double Shot Café
share stories and enjoy yourself.
Claude
Page 4 March 2020
ACTIVATED
HAEMOPHILIA FOUNDATION
AUSTRALIAN CAPITAL TERRITORY
Have you been PROBED yet?
It's not too late to complete the PROBE
(Patient Reported Outcomes Burdens
and Experiences) questionnaire!
The survey is available at
tinyurl.com/PROBE-Australia
or ask HFA or HFACT for a print copy.
HOW WILL PROBE HELP PEOPLE WITH HAEMOPHILIA?
PROBE is a multinational study where Australians can
give evidence about living with haemophilia and the
impact of different sorts of treatment on their bleeds,
pain and quality of life.
HFA will use the data to better understand current is-
sues - and this data is crucial for our treatment advocacy.
You are invited to complete the survey if:
• you are an adult with haemophilia or carry the gene
• or you are an adult and DON'T have a bleeding disorder (as a comparison group)
Consider being involved to help us with this important study!
ANY QUESTIONS?
For more information about PROBE in Australia, visit
www.haemophilia.org.au/research/probe-study
Or contact Suzanne at HFA:
E: socallaghan@haemophilia.org.au
T: 1800 807 173
ANU Medical School Teaching Sessions
The ANU Medical School conducts regular teach- As ANU Semester 1 has only just started, the rele-
ing sessions every year during which patients talk vant dates for 2020 are still to be confirmed. HFACT
about living with a medical condition with a small will post the dates on our website when known.
group of 2nd year medical students. Each session Meanwhile, if you are interested in volunteering for
takes place over an afternoon. one or more of these topics, please contact:
The sessions cover a wide range of medical condi- Alastair Walters
tions over the course of the year, including condi- Volunteer and Patient Recruitment Officer
tions relevant to our group - bleeding disorders, ANU Medical School,
blood borne viral diseases and paediatric condi- Canberra Hospital Campus
tions. ANU is seeking HFACT members who might ANU College of Health and Medicine
be interested in volunteering for one or more of The Australian National University
these sessions in 2020. Building 4, Canberra Hospital
Garran ACT 2605
The Medical School can book and pay for taxi
transport to and from the sessions and offers all vol- T: +61 2 5124 3389
unteer participants a $30 gift voucher as a token of F: +61 2 5124 4960
appreciation. E: alastair.walters@anu.edu.au
March 2020 Page 5
ACTIVATED
HAEMOPHILIA FOUNDATION
AUSTRALIAN CAPITAL TERRITORY
Multidisciplinary Review Clinic Dates, First Half 2020
HTC Nurse Jayne Treagust has uled for Friday 24 April 2020. If you are unsure which date
given advance notice that applies to you please contact
The second clinic, for patients
due to some unforeseen cir- Jayne Treagust on
of Dr Michael Pidcock, will be
cumstances there will be two 0481 013 323 or
on Friday 15 May .
bleeding disorders multidisci- haemophilia@act.gov.au to
plinary review clinic for the first Save the date that is appro- discuss your circumstances
half of 2020. priate for you. You will be with her.
contacted closer to the clinic
The first clinic, for patients of
day with an appointment
Dr Nalini Pati, has been sched-
time if you are on the list.
Getting Older Project - an Update
The HFA Getting Older project
aims to identify, understand
and respond to the range of
needs people with bleeding
disorders may have as they
grow older, and help find ap-
propriate solutions for them
and their partner/family or
friends/carers. I have been
participating as a community
member on the Project Advi-
sory Group since May 2019.
My role is interesting, and I
have participated in a num-
ber of discussions with the ad- Getting Older Project workshop in Melbourne , November 2019
visory group covering such
things as current and emerg-
We worked in three small puts from this session feed into
ing issues in bleeding disorders
groups. The groups consisted an online information hub that
and getting older, survey con-
of a group of men with hae- will be available as part of the
tent and results, and, how to
mophilia, a mixed group of HFA website.
provide information to the
men and women with a
community. The initial needs assessment
bleeding disorder (including
project is drawing to a close
In November a group of com- von Willebrand Disease) and
and the report will be availa-
munity members from across a group of spouses. It was in-
ble later in 2020. Keep an eye
Australia, including myself and teresting that, for the various
out for an update in the next
Len Minty from Canberra, par- exercises, each group ap-
issue of National Haemophilia.
ticipated in a workshop to proached the questions from
consider digital solutions for a different perspective but
peer support and education. when results were presented Jenny Lees
The day was interesting and and combined it resulted in a
productive; the mix of partici- complete picture. Thanks to
pants ensured that many dif- Suzanne and Preetha for run-
ferent ideas were canvassed. ning the day so well. The out-
Page 6 March 2020
ACTIVATED
HAEMOPHILIA FOUNDATION
AUSTRALIAN CAPITAL TERRITORY
WFH 2020 World Congress – HFACT Grant available
Overview tendance and education activi- tralia. It is an opportunity to learn
ties. This will not cover the full about the latest research and
The World Federation of Hemo-
cost of attendance but should advances in treatment, gain
philia World Congress is the larg-
cover a large proportion. knowledge of how treatment is,
est international meeting for the and is not, delivered in other
global bleeding disorders com- To be eligible you must be a fi- countries and how grass-roots
munity and it is hosted in a differ- nancial member of HFACT organisations, like ours, are oper-
ent country every two years. (check with the Treasurer – ating around the world. From
treasurer@hfact.org.au if you are each congress I went away with
The WFH World Congress is a key unsure of your status). the knowledge that while the
event for the WFH and for the treatment available in Australia is
global inherited bleeding disor- Expressions of interest should be good, there is still room for im-
ders community. Every second emailed to the Secretary provement and that the bleed-
year, doctors, scientists, secretary@hfact.org.au by 10th ing disorders community needs
healthcare workers, people with April 2020. You should include to keep putting their case for-
bleeding disorders and haemo- your reasons for wanting to at- ward.
tend, how it will benefit you and
philia organisations gather to
the HFACT community. It will We are also much better off than
learn about the latest develop-
strengthen your case if you show many countries in the world and
ments in bleeding disorders treat- how you have (or will) partici- World Federation of Hemophilia is
ment and care. It is during this pate with HFACT. The successful working to improve diagnosis
important meeting that the dis- applicant will be expected to and treatment world-wide. I en-
cussions and debates that will provide an article about their courage anyone to attend a
shape our global organization experience at the congress for World Congress if they get a
and community take place. the HFACT newsletter ACTIVATED chance.
and / or a presentation about
The 2020 Congress will take place
in Kuala Lumpur, Malaysia June
the congress to HFACT members
at a social event.
Jenny
14-17. For details go to
www.wfh.org/congress Congress Musings
I have attended two World Con-
HFACT Congress Grant gresses – Paris in 2012 as an at-
The HFACT Committee has funds tendee and Melbourne in 2014
available to sponsor a communi- as a volunteer.
ty attendee to the 2020 World
Congress in Kuala Lumpur. The Both congresses were eye open-
amount of $2,500 is available ing and great experiences. You
from HFACT fundraising activities get the chance to mix with peo-
and the donation from the Stever ple from all over the world and
family (2018) for conference at- hear about experiences that are
quite different from those in Aus-
March 2020 Page 7HAEMOPHILIA FOUNDATION
AUSTRALIAN CAPITAL TERRITORY ACTIVATED
Wanted - Newsletter Editor
The ACTIVATED newsletter editor uted via mail, email and pub- If you are interested or would like
is standing down after over 16 lished to the HFACT website. Cur- more information, please email
years in the role. rently the editing, layout, printing, newsletter@hfact.org.au or
stuffing, mailing and website up- president@hfact.org.au
HFACT is reaching out to the
date is done by one person. This
community to find someone, or
does not need to remain the Production of the newsletter is
more than one, to take on the
case. A laptop and printer go one of the requirements of the
role.
with the role and, if required, funding that provides the ser-
training can be provided as part vices of our counsellor, Kathryn.
ACTIVATED is produced three to
of the handover. It is important that this role be
four times per year and is distrib-
filled.
Reading the paper copy? Clicking on the underlined links with your index finger doesn’t work? ☺
Switch to the electronic version to get interactive features. Join the approximately half of ACTIVATED sub-
scribers who have already made the switch by contacting me at newsletter@hfact.org.au .
Dates For Your Diary
Saturday 28th March, 2.30pm Women’s Wisdom, Hyatt Hotel, Yarralumla - RSVP 20th March
Friday 10th April Due date for World Congress grant expressions of interest
Sunday 19th April, 12.30pm World Haemophilia Day Picnic at Nara Peace Park - RSVP 13th April
Friday 24th April Multidisciplinary Review Clinic - Dr Pati’s patients
Friday 15th May Multidisciplinary Review Clinic - Dr Pidcock’s patients
June 14 - 17 2020 WFH 2020 World Congress, Kuala Lumpur, Malaysia
Haemophilia Contact Details
Canberra Hospital Haemophilia Foundation ACT
Main telephone: 5124 0000 President: 0412 839 135
Website: https://health.act.gov.au/hospitals-and- president@hfact.org.au
health-centres/canberra-hospital Counsellor: 0409 830 472
counsellor@hfact.org.au
Haemophilia Treatment Centre:
More details at: www.hfact.org.au/contact-us
Mon to Fri 9am - 5pm
On duty nurse: 0481 013 323 Haemophilia Foundation Australia
Via email: haemophilia@act.gov.au
Free call: 1800 807 173
More details at: www.hfact.org.au/treatment
Website: www.haemophilia.org.au
Our Mission Acknowledgement
“To improve the wellbeing of the haemophilia The newsletter of Haemophilia
community through mutual support, networking, Foundation ACT is supported
advocacy and striving for optimal health care.” by ACT Health Directorate.
HAEMOPHILIA FOUNDATION This newsletter is printed on 100% recycled paper, carbon
PO Box 331
AUSTRALIAN CAPITAL neutral if possible. Contact us if you would prefer to save paper
MAWSON ACT 2607
TERRITORY and postage by receiving the electronic version via email.
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