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HFACT Newsletter July 2009

Patron: Maj-Gen P. Phillips AO MC
Address: GPO Box 936 Canberra City ACT 2601

 
 

HAEMOPHILIA FOUNDATION  
AUSTRALIAN CAPITAL TERRITORY  

NEWSLETTER

       

Haemophilia Treatment Centre News

Greetings to all.

HFACT has been actively working with the Canberra Hospital to improve the level of haemophilia care being provided to people in the ACT and surrounding districts. The main focus has been on increasing the availability of specialist nursing care available through the Haematology/Oncology department.

Liz Jarvis has been invaluable to the haemophilia community over the last four years. Liz will continue as our haemophilia nurse for a further three months. HFACT and the Capital Region Cancer Service are in the process of reviewing haemophilia services available in the ACT in order to provide a more robust service to the Canberra community.

   

HFACT is always interested in receiving feedback from members on how the haemophilia service at the Canberra Hospital can be improved. Please forward comments to:

President@hfact.org.au
or contact me on 6288 5775 (AH) or 6127 1286 (W)
or Clare Reeves on (02) 6255 6779 or 0409 830472.

Best wishes,

Joe Guarnieri


       

Global Feast

HFA are again promoting Global Feast in support of people worldwide with bleeding disorders. You may have noticed articles in the national newsletter.

We haven’t made a concerted effort locally in recent years to raise money for this worthwhile project mainly due to the many other commitments we undertake as a group. In April I hosted a morning tea at work and baked a few home-made goodies and managed to collect $100. If this project is of interest to you, I would invite you to perhaps host a morning/afternoon tea or meal either at home or at work. I have collection tubs available for display with the Global Feast logo and would be happy to deliver them to you.

Money can be passed to me for forwarding to HFA and receipts can be issued for tax deductible donations of $2 or more provided you are able to take details of the donors.

   

If you have any other ideas for this fundraising venture or would like to suggest a much bigger/better way of raising money then please let me know!

We are lucky to live in a society which has good health care for people living with haemophilia. Our less fortunate brothers and sisters internationally will be more than appreciative of our assistance.

Thank you,

Lorraine Saunders

0406 585 015


DATES TO REMEMBER

18th July 2009 Mid Winter Dinner
25th July 2009 Women’s Wisdom Genetics Update and afternoon tea
31st July 2009 Early bird Haemophilia Conference registrations due
8-11 October 2009 15th Australian and New Zealand Haemophilia Conference, Brisbane
25th October 2009 HFACT fund raising BBQ at Bunnings Fyshwick


       

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Astro's Prickly Adventure

Astro is our Rainbow Lorikeet parrot. He has beautiful colours and is a very intelligent bird but highly curious and gets into a lot of mischief and trouble! Astro has been trodden on, almost crushed in a sliding door, got string twisted around his claws and was unable to move all day, has escaped being caught by neighbourhood cats and Currawongs whilst in the garden, has twice flown away and been found.

Recently his curiosity almost got the better of him when he went snooping around the garage to see what fun he could have there. I was keeping a watchful eye on him but the phone rang. By the time I got back he was nowhere to be seen. I could hear a kind of "rustling" noise in the garage somewhere. I called and whistled to him but no response. I just kept hearing this funny noise. I knew he was there somewhere but I couldn’t see him anywhere!

I tracked this sound and to my horror it led me to the sharps bin. There he was at the bottom of the bin! The little rascal had somehow got onto the lid and of course slid straight down the flap! I don’t have to tell you the horror I experienced when I saw him in this predicament. This large bin was 1/2 full of hundreds of sharps and needles and here was my Astro peering up at me looking rather helpless with a look of despair and as if to say "get me outta here quick!!" I put my hand in past the flap and tried to coax him to come to me but he kept getting stuck under the flap.

Needless to say (pardon the pun) he was not a happy little bird and became quiet as if resigned to his fate. Panic and terror gripped me, what was I to do? I thought about calling the Fire Brigade or rushing him with bin in tow to the hospital.

   

I feared Astro’s luck may have finally run out... Before taking that course of action, I thought I would grab a hammer and somehow break open that impenetrable seal myself. A vain and stupid attempt really as I doubted it was going to achieve anything, other than give Astro a big headache or a heart attack by the pounding on the hard plastic but I thought it was worth a try.

So I gently placed the bin flat on the ground and ran off to get the hammer. In the meantime my mind was racing with this medieval image of Astro being pricked all over with all these needles, blood pouring out of his little body... just horrible... Anyway by the time I came back there was Astro out of the bin and as happy and chirpy as ever! The flap must have been at the right angle and lifted, so that as soon as he saw the light (sorry, another pun), he was outta there! Just brilliant!! What a wonderful feeling of relief engulfed me at that moment!

I then checked him over and over and nothing, no blood, no needles sticking into him... He was perfectly OK!! In case you are wondering he still appears to be to this day, four weeks after the event. I guess his incredible feathers acted as a buffer and a shield against the sharps. God has certainly created these little creatures to withstand enormous calamities.

So Astro survives to ‘tell’ the tale and to lives another day!

Maria Wensing


Astro and Maria
       

       

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Get Well Soon

Len Minty fell ill while on holiday in China, sadly having been in China for only a few days. Len is back in Canberra and has been recovering in Canberra Hospital for some time.

Simon McMenamin is in hospital in Sydney undergoing surgery for a knee replacement.

   

The HFACT committee sends our best wishes and a get well message to both Len and Simon. We hope that you both have a short convalescence and are back on your feet soon.


       
     
 

WOMEN’S WISDOM

An informal group for women who carry the haemophilia gene and/or are carers of people with haemophilia or other inherited bleeding disorders.

Genetics Update

Guest Speaker: Linda Warwick, Senior Genetic Counsellor
Genetics Department, The Canberra Hospital

Afternoon tea will be served. Please bring a small plate.

When: Saturday 25th July, 2009, at 2.00 - 4.00 pm
Where: The home of Jenny and Ron Lees,
48 Crowder Circuit, Stirling, ACT

RSVP by 22nd July 2009:

Kate: katjamck@bigpond.com, 6159 7194 or 0427 792 753
or
Jenny Lees, home: 6288 8115     mobile: 0410 543 086

 


       

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15th Australian and New Zealand Haemophilia Conference
Subsidies available!

HFACT has funds available to subsidise attendance at the conference in Brisbane in October this year. In addition to allocated funds from our annual ACT Health grant we have been lucky enough to attract some sponsorship from information technology firm Oakton.

For those who have never attended one of our conferences I would encourage you to give consideration to attending this conference. Haemophilia conferences cater for people with bleeding disorders, their families and carers and the professionals providing services for people with Haemophilia. You could find yourself chatting to a doctor, physio, nurse, counsellor, person with haemophilia, carrier, parent, sibling or spouse over a tea break or lunch time. It is a great opportunity to meet others in the same situation and a chance to compare treatment, outcomes and life in general when living with chronic conditions.

It is also a chance to hear about developments in care and treatment around the world.

In the past we have provided subsidies for conference registration, travel and accommodation. The amount available will depend on demand and need. Please contact one of the people below (or any committee member) if you are interested in attending the conference and would like to be subsidised.

   

President: Joe Guarnieri
President@hfact.org.au
ph: 6288 5775

Counsellor: Clare Reeves
Counsellor@hfact.org.au
ph: 6255 6779 or 0409 830472

Secretary: Jenny Lees
jenny@lees.id.au
ph: 6288 8115 (ah) or 0410 543 086

As early bird registrations close at the end of July we would appreciate expressions of interest by 27th July 2009. I urge you to seriously consider attending the conference. I have found it a useful source of information and contacts over the years.

Jenny Lees


HFACT thanks ACT Health and Oakton for their support to send members to the conference.

ACT Health logo

Oakton logo


     
 

Acknowledgment

The Haemophilia Foundation ACT would like to acknowledge
that our newsletter has been produced through funds
provided by ACT Health.


 

 Contact: Secretary@hfact.org.au
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Last updated: 7 March 2010