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09 July

VIEWS: 8 PAGES: 10

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        July 2009                                Newsletter of Haemophilia Foundation WA Inc.                                      Page 1




                                            Notice of
                                     Annual General Meeting
           The Annual General Meeting of Haemophilia Foundation WA Inc. will be held on
                                   Wednesday 5 August 2009

                         The meeting commences at 7.30pm in the Conference Room at
                                         City West Lotteries House
                                         2 Delhi Street, West Perth

                                   Please see the enclosed flyer for all the AGM details


                                  WE LOOK FORWARD TO SEEING YOU THERE!



Inside this Issue:


Committee Details................................................... 2      Entertainment Books .............................................10
President’s Report .................................................. 2     Quote of the Day ...................................................10
President’s Report Continued ................................. 3            Calendar of Events................................................10
Conference Registration ......................................... 4
Hepatitis C Disclosure Fact Sheets......................... 4
Tale of Two Knees .................................................. 5      Enclosures
Tale of Two Knees Continued ................................. 6             AGM Notice
On Track Pre University Program ........................... 6               Entertainment Book Flyer
Veinous Access Workshop ..................................... 7             Front Page Submission Form
Contact Details ....................................................... 8
Haemophilia Awareness Week ............................... 8
Mao’s Last Dancer, Movie Fundraiser..................... 9
           July 2009                                                                              Page 2



Committee Details:

David Bell          (President)      9414 8153                 Gavin Finkelstein    9328 6265
Cheryl Ellis        (Vice President) 9497 3241                 Sharri Brodie        9454 3621
Robert Butler       (Treasurer)      9284 3383                 Robert McCabe        9284 3124
Michelle Dinsdale   (Secretary)

Profiles of the committee members can be seen on the website, www.hfwa.org. “Your Committee”.

SHARON HAWKINS Haemophilia Counsellor/Co-ordinator is located at Royal Perth Hospital Ph: (08) 9224 2330
Fax: (08) 9224 8022 Mobile 0404 039 971
Counsellor/Coordinator Office Hours: Monday - Friday 9.00am - 5.00pm
MELANIE GOULD Secretary/Office Coordinator Haemophilia Foundation Western Australia Office
Ph: (08) 9420 7294 Fax: (08) 9486 8966 Email address: office@hfwa.org
Office Hours: Monday, Tuesday & Wednesday 9.15am - 2.15pm


Presidents Report:


  G’day everyone                                           HFWA have a family BBQ planned for
                                                           Saturday, 17 October 2009 which will be held
  Hope all is well and you are braving the cold            at Tomato Lake in Belmont. The event is open
  weather - rugging up and staying warm this               to all members of the HFWA community. More
  winter? It’s the right time of year to get the           details will be in the next issue of Contact.
  stockpot out and get your favourite soup on
  the boil.                                                Haemophilia Awareness Week will be the 12-
                                                           16 October 2009. HFWA will have a stand at
  HFWA has been simmering along with a few                 Garden City Shopping Centre on the Friday to
  things happening. The Men’s Breakfast on 24              raise awareness.
  May was well attended with 11 guys
  socializing over brekkie at Citro Restaurant in          If you can spare a few hours to hand out
  Perth. The Women with Inherited Bleeding                 literature on haemophilia and related bleeding
  Disorders (WWIBD) group held an afternoon                disorders to the general public it would be
  tea and a clothing party on 19 April, with a few         greatly appreciated. With your help we can
  dollars raised from the sales donated to                 educate the general community about
  HFWA. The WWIBD breakfast was held only                  haemophilia and bust the many myths that we
  a few weeks ago at Jetty’s Restaurant with 11            so often hear, the standard cliché being - if a
  ladies attending.                                        person with haemophilia cuts themselves they
                                                           will bleed to death?
  HFWA held a Von Willebrand’s disorder
  information evening on 1 July with 21 people             Please contact Mel if you can help out on the
  attending, Maria Baccala from the Haemophilia            day.
  Treatment Centre (‘HTC’) at Royal Perth
  Hospital (‘RPH’) presented a clinical talk at the
  information session that was held at City West
  Lotteries House


                                                                                       Continued Next Page
        July 2009                                                                          Page 3



President’s Report Continued:

 From Page Two                                      (community,      hospitals     and    general
                                                    practitioners). The exact location for the
 The foundation’s possible orthopaedic              statewide centre is yet to be determined;
 information session that had been mentioned        however ongoing consideration on the best
 in the last few issues will not be going ahead;    location is underway to ensure a high
 our knee jerk reaction has been to cancel the      standard of service will be provided.
 idea due to low interest. If you require any
 form of orthopaedic surgery, speak to your         I appreciate your interest and concern and I
 HTC for a referral to an orthopaedic surgeon;      wish to assure you that there will be ongoing
 see what surgical options you have to make         discussion with all stakeholders regarding the
 those troublesome joints a little easier to live   future direction of haemophilia care and
 with                                               services in Western Australia”.

 Unfortunately we have cancelled the go-kart        HFWA will keep members informed about any
 event as we only had three members that            developments and continue to advocate on
 expressed interest in attending. HFWA is           your behalf, to ensure haemophilia and
 really keen to see a local youth group form        bleeding disorder care is not overlooked in
 and evolve with quarterly activities hosted by     the future expansion and upgrade of the
 the foundation. If junior members can provide      public health system.
 HFWA with feedback on what youth need or
 want, we can organise events that we hope          The committee have decided to change the
 will get a good attendance. Please let us          face of Contact by having a coloured cover
 know via the office or contact Rob McCabe,         printed for your newsletter. You or your
 our HFWA youth delegate who is also a              families mission, if you decide to take it, is to
 member of the HFA youth committee, with            design a coverpage that you feel best
 any ideas you may have.                            captures HFWA.         The design that the
                                                    committee feels should grace the new look
 On behalf of its members, HFWA recently            Contact will receive a prize. HFWA will
 directed a letter to the Health Minister seeking   present the wining designer a Coles/Myer Gift
 clarification on the future of haemophilia and     Card to the value of $100.00, which can be
 related bleeding disorders health care and         redeemed at the many Coles/Myer affiliated
 proposed health services at Fiona Stanley          stores.    So get those coloured pencils
 Hospital. The Minister responded with a            sharpened, the paintbrushes and easel out, or
 positive     reply    assuring    HFWA      that   make sure the digital camera batteries are
 haemophilia care and services will remain at       charged; get the creative juices flowing and
 the three tertiary hospitals. Quote from Dr        add your splash of colour to Contact!
 Hame’s response.
                                                    Hooroo
 “In addition the heads of departments of the       David Bell
 tertiary services have proposed the
 formalisation and establishment of a state
 wide Haemophilia Centre. The role of the
 statewide centre would be to provide an
 administrative structure for service delivery
 and the coordination of services across the
 metropolitan area to minimize duplication
         July 2009                                                                               Page 4



15th Australian & New Zealand Conference Registration:

 Registrations are now open for the conference. Register online at
 www.haemophilia.org.au/conferences, or call Melanie in the
                                                                                       RY!
 office on 9420 7294 for a registration form.                                    HUR
                                                                                           d
                                                                                      y Bir     ng
                                                                                  Earl ns Closi
 Registration includes admission to all plenary and                                  tio
                                                                                istra       009
 concurrent sessions, conference satchel, abstract book,                     Reg 1 July 2
                                                                                  3
 welcome & exhibition opening on Thursday evening, morning
 and afternoon tea, and lunch on Friday and Saturday.

                                            Early Bird Draw

 If you book and pay for your registration by 31 July, you will go into the draw to win the following
 prizes courtesy of Brisbane Marketing:

 •1st—Two nights accommodation at the Sebel Citigate valued at $400

 •2nd—Two nights accommodation at the Sebel Citigate valued at $400

 •3rd—Double pass to climb the Brisbane Story Bridge valued up to $198

 Haemophilia Foundation Australia (HFA) will offer funding to youth from around Australia to
 attend the Brisbane Conference.        For more information contact Natashia Coco on
 ncoco@haemophilia.org.au or visit the HFA website on www.haemophilia.org.au/conferences.




HFA Hepatitis C and Disclosure :Fact Sheets

 HFA launched two disclosure fact sheets for people with bleeding disorders and hepatitis C.

 •     My choice to tell—at work
 •     My choice to tell—family, friends, new partners

 These fact sheets are available at HFWA’s office, Sharon Hawkins or can be downloaded from
 the HFA web site—www.haemophilia.org.au.

 For further information on Hepatitis C resources, please contact HFA on 1800 807 173.




Opinions expressed in Contact do not necessarily reflect those of the Foundation. All information is
published in good faith but no responsibility can be accepted for inaccuracies that may result from events
beyond our control. HFWA reserves the right to edit articles as it sees necessary.
        July 2009                                                                         Page 5



Tale of Two Knees:

 I had my first total knee replacement (‘TKR’)      better degree of flexion (bending in the knee).
 back in 1992. It was my left knee and after a      This was the price I paid with the delayed
 few years of just putting up with it and           start to my Physiotherapy.         Overall the
 pushing through with the pain and discomfort.      change it has made to my life style has been
 I think it took about another 18 to 24 months      well worth it.
 to actually to have it carried out, after the
 initial decision was made. Things like getting     My second TKR was on my right knee and
 to see a suitable orthopaedic, AHF stock had       was carried out at Hollywood Hospital in
 to be sorted and stockpiled and then hospital      March of this year. This time around it took
 time, etc.                                         less than six months to have the surgery
                                                    carried out. I first thought I was due for some
 Naturally there was a lot of hesitancy from all    orthopaedic intervention for my knee when I
 parties at the time. I can recall the Ortho’s      was on Cable Beach, Broome in July 2008 for
 first option to me being an amputation of the      my bi-annual sabbatical (holiday). I found that
 leg. I can’t say for certain whether or not he     I could not walk my normal distance along the
 was just having a joke or testing me on how        beach without experiencing a lot of pain.
 much of a problem my knee was to me at the         Don’t get me wrong, I’d had ongoing
 time. I don’t think too many people my age         discomfort and pain from that knee for quite a
 with haemophilia in WA were having TKR’s.          while but this was the straw that broke the
                                                    camels back. I decided that when I got back
 I eventually had the surgery at Fremantle          home I would have it reviewed by Dr
 Hospital and everything went pretty well as        Witherow.
 much to plan at the time. I did have a bleed
 into the knee about 24 hours post surgery,         I think I saw the good Doctor in late August
 which postponed my recovery physio. This in        early September 2008. I still had fairly good
 turn influenced what motion and benefit I          range of motion and little pain from un-
 would have after I had fully recovered from        weighted motion so we decide that the best
 the surgery. It wasn’t a major bleed and           path was an arthroscope procedure to clean
 responded pretty well within 12 to 24 hours        and trim any “loose bits” within the knee. This
 due to and increase in product an RICE             procedure is less aggressive surgery than a
 therapy. I personally felt that it may have        TKR and the results could have been what I
 been trauma related. Generally after knee          was wanting with less invasive surgery.
 replacement surgery, you are placed in a
 constant motion machine that basically helps       Unfortunately the inside of the knee was a
 to bend the knee without you using your own        little worse than we were expecting and
 muscles. I felt uncomfortable in the machine       required a full synovectomy. When I awoke
 and I just didn’t seem to fit into it correctly.   in the recovery room, I had extreme pain from
 Now it’s water under the bridge and only just      my knee and felt that it was more bleed type
 my opinion of what possibly triggered the          pain than surgical. I spoke with the nurse
 bleeding.                                          who immediately informed the doctor. I was
                                                    given good pain relief and infused with more
 Sitting back now and assessing the situation I     Factor. As per usual I responded pretty
 can say that even with that initial setback the    quickly to the increase in Factor and spent a
 whole procedure was well and truly worth it. I     total of two days in hospital.
 virtually have full extension and definitely no
 pain or aching with that knee. The only thing I
 wish were different was that I could have a                               Continued Next Page
        July 2009                                                                          Page 6



Tale of Two Knees Continued:

 From Page Five                                     I knew that I needed to manage a balanced
                                                    physiotherapy programme to enhance the
 When the time came for my first post surgery       chances of a better outcome for my knee. I
 review about a week later, I mentioned to Dr       seemed to have gotten that right as my post
 Witherow that I felt that there had been no        surgery motion has improved with time and
 improvement with my knee and that in fact, it      exercise. When I compare the outcome of
 felt worse than before surgery. We decided         both the TKR’s, I feel that they both achieved
 that it was too soon to make a real call on the    pretty much of what I was wanting, pain free
 possible final outcome and decided to follow       joints that enabled me to walk. Although with
 up in a month’s time. A month later I still felt   my second TKR the scheduling, recovery and
 the same about my knee and we decided that         management improved with time and
 a TKR was required. Unfortunately, this is         experience.       What I think was also a
 the path we must travel when seeking               significant difference in the two procedures
 surgical answers to our problems. The              was that I didn’t wait as long with the second
 possibility of a good result from less invasive    knee before I sort out answers to the problem
 surgery has to be the first option, followed up    and that I drove it until we achieved a
 if necessary, by the more aggressive               successful outcome. I suppose we had a
 procedure which is all pretty well self            better leg to start with. To quote Dennis
 explanatory.                                       Denuto (The Castle, Darryl Kerrigan’s lawyer)
                                                    “It’s the vibe of the thing”. It was the vibe of
 It was now mid to late November with               the thing this time!
 Christmas and holidays coming up, so I was
 scheduled in for 17 February 2009. I’d be          All surgery has inherent risks and any
 back at Hollywood for my second TKR. This          decision regarding either to have or not to
 time all went extremely well. There was no         have surgery is up to the individual. Those
 post operative bleeding, I was up on my feet       contemplating surgery should seek all
 within 12 hours with the aid of a Zimmerman        possible information regarding outcomes and
 frame and 24 hours later I was walking the         risks associated with that type of surgery
 hospital hallways unaided and painless. I          planned prior to the surgery.
 spent about seven days in Hospital, mainly to
 ensure that I didn’t have a bleed. The             Geoff Sue
 treatment and management I had received on
 all my surgical procedures has been
 outstanding from all those involved.



On Track Pre-University Program:

 Murdoch University has a free pre-university program aimed towards people who have had
 educational disruption or disadvantage.

 For more information and application details, please contact Murdoch University on 9360 2609,
 email: ontrack@murdoch.edu.au or visit www.tld.murdoch.edu.au/.
        July 2009                                          Page 7



Veinous Access Workshop

 We recently attended the Veinous Access
 Workshop held by HFWA. We have three children
 and our two boys Ewan 5 and Kobi 8 months, both
 have Haemophilia A. At the moment only Ewan
 requires treatment and we are cruising along
 giving him injections via the port, thinking the port
 is making life very easy for us to administer the
 factor VIII. However, over the next 12 months we
 would like to start injecting via the veins.

 We were very fortunate to have Dr Price attend as
 well as haemophilia nurses Maria, Jill and Sister
 Lee and thank them very much for giving up their
 time. Dr Price spoke of the background behind
 having infuser ports and suggested the ages when
 children should start to have injections via the
 veins and when to self infuse. He also
 demonstrated the technique for injecting on a
 practice arm as well as on our young volunteer
 Xavier. It was through the demonstrations that
 questions were asked and tips were suggested.
 We came away with a few useful tips, one in
 particular was using a heat pack around the
 injection site to help find veins easier.

 We attended the workshop minus Ewan as we
 thought it was more for our benefit than his but
 were surprised to see a lot of the kids around his
 age present. It was great to see the kids, who
 have all grown so much, taking an interest in the
 senior members who were demonstrating self
 infusion. It looked like they were quite enjoying
 themselves on the practice arm as well!

 We both feel confident to take this next step but
 don’t feel Ewan is quite ready to change over just
 yet . He is still a little traumatised from his earlier
 years of having drips, etc. in his hand and believes
 that it hurts having his Factor that way. We
 enjoyed seeing and catching up with people that
 are in the same boat as us and where they are at
 with their treatment. Thank you once again to
 HFWA for organising a very informative workshop.

 Nicole Wyatt
        July 2009                                                                         Page 8



Contact Details:

 You might like to add these numbers to your contact list:

 Fremantle Hospital:                                                9431 3333
 Haemotolgy Reception:                                              9431 2866
 Sandra Lochore, Dedicated Haemophilia Nurse:                       9431 2210
 Pharmacy:                                                          9431 2060
 Heather Head, Physiotherapy:                                       9431 2071
 Secretary, Immunology                                              9431 2310

 Royal Perth Hospital:                                              9224 2244
 Haemophilia Centre:                                                9224 2897
 Maria Baccala, Haemophilia Nurse:                                  9224 2937
 Catherine Piggott, Physiotherapy:                                  9224 2179
 Pharmacy:                                                          9224 2479
 Immunology                                                         9224 2899
 Gastroenterology and Hepatiology:                                  9224 2179

 Princess Margaret Hospital:                                       9342 8222
 Sr Lee, Haemophilia Nurse (Monday, Tuesday & Friday)              9340 8222 Pager 7149
 Wednesday & Thursday                                              9340 8022
 Pharmacy:                                                         9340 8509
 Physiotherapy:                                                    9340 8503




Haemophilia Awareness Week:


                                  11—17 October 2009

 Volunteers Wanted
 The information stall at Garden City Shopping centre last year turned out to be a huge success,
 so much so, we ran out of balloons to hand out to kids. So this year, we have decided to go
 back to Garden City for Haemophilia Awareness Week.

 We will be there from 9.00am Friday, 16 October 2009. If you can spare any time to man the
 stall, hand out information and have a chat to interested passers by, please email Melanie in
 the office at office@hfwa.org or give her a call on 9420 7294 and let her know what time you
 are available.

 If you are unable to help, but will be in the centre, come along and say Hello anyway.

 We will look forward to seeing you there.
       July 2009                                                           Page 9



Movie Fundraiser:


 Mao’s Last Dancer
 Yet to be classified.

 Screenplay written by Shine writer, Jan Sardi.

 Coming in 2009.

 Haemophilia Foundation WA is pleased to bring
 you Mao’s Last Dancer for its next movie
 fundraiser.

 The $25 million production is an Australian film
 which tells the international story of a Chinese-
 born man who became a world renowned ballet
 dancer.

 Starring professional ballet dancers Chi Cao, Amanda Schull and Camilla Vergotis
 alongside better know names like Jack Thompson, Kyle MacLachlan and Joan
 Chen.

 Filmed in the mountains of eastern China, Houston Texas and Sydney and based
 on Australia Book of the Year Award winner, Mao’s Last Dancer is an
 autobiography which tells the story of Li Cunxin who, was chosen to leave his
 peasant family in China and go on a journey, leading him to freedom and personal
 triumph.

 Li is now an Australian citizen, but the film concentrates on his earlier life in
 China and the US and is very much an Australian film, despite its global setting.

 Keep your diaries free during October to support HFWA and another great
 Australian film.

 Tickets will be available from HFWA’s office. Further information on ticket sales
 and a release date will be published in the September issue of Contact and on the
 HFWA website.

 For information, please contact Melanie in the office on 9420 7294 or email:
 office@hfwa.org.
         July7 2009                                                                    Page 10


Entertainment Books:

  Haemophilia Foundation WA is again selling Entertainment Books to raise funds. The
  2009/2010 Entertainment book is selling for $65.00. A portion of the proceeds from the sale of
  the books will help with our fundraising.

  To order your copy of the Entertainment Book, simply complete the enclosed order form and
  send to Melanie in the office.

  Can you help us sell books?
  When surveyed, most people said that they didn’t know where to get an Entertainment Book.

  Are you able to help spread the word that HFWA has books to sell? Here’s how you can help.

  Don’t throw the enclosed flyer away:

  •     Put it up at your local shopping centre.
  •     Pin it to the notice board at your school.
  •     Pop it in someone’s letter box (as long as it doesn’t say NO JUNK MAIL!).
  •     Pin it up on the notice board at work.
  •     Email a copy to your address lists.

  Entertainment Books are full of great ideas to keep the kids occupied during the school
  holidays, so next time you hear someone say “the kids are bored”, offer them an Entertainment
  Book.




Quote of the day:

  Good judgment comes from experience, and often experience comes from bad judgment.




 CALENDAR OF EVENTS — 2009


 July                                              August

 Monday 13                  Busselton Dinner       Sunday 2            Women’s Breakfast
 Tuesday 14                   Albany Dinner        Wednesday 5                     AGM
                                                   Sunday 16             Men’s Breakfast
                                                   Friday 28—Sunday 30    PEP Weekend

								
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