NEWSLETTER

President’s Update

Greetings to all.

Hi everyone. I have once again accepted the position of President and am pleased to be able to update you on the various changes that have happened in recent months.

AGM and New Committee

Our Annual General Meeting was held on 23 September, at which a new committee was elected to manage the business of HFACT. Apart from my taking up the president's position, we also have a new Vice-President - Tim Crowden, and Treasurer - Sarah Collins. Jenny Lees continues to hold the position of Secretary. We will be assisted by Lorraine Saunders, Maria Wensing, Leonard Wills, Stephen Wells and Simon McMenamin who have agreed to be general members of our committee. I would like to welcome Tim and Sarah to their new roles.

The Annual report and financial statements for 2008/09 were presented at the AGM and these can be viewed on our website (see menu at left).

Thanks to Outgoing Committee Members

I would like to thank our outgoing president Joe Guarnieri for his efforts in bringing our concerns relating to the operation of the Haemophilia Centre to the attention of hospital management. Through his persistence and the support of the previous committee we have managed to get a positive outcome.

I would like thank Stephen Wells for many years of service as our Treasurer. He has been working quietly and consistently to ensure that our finances are in good order. This responsibility will now fall upon Sarah.

I would also like to thank Len Minty for his ongoing support of the committee. Len was our Vice-President for the year but, due to illness, was unable to participate as much as he would have liked. We have managed, nevertheless, and are pleased that things are improving for him.

Haemophilia Counsellor

I am please to announce that, following recruitment action in August and September, we have appointed Phillip Öhman to the position of Haemophilia Counsellor with HFACT. Some of you may already have met him at the hospital or recent review clinic. I would like to take this opportunity to welcome Phil to this role and encourage all of you to make yourself known to him.

Improved Arrangements for Haemophilia at The Canberra Hospital

Jenny Lees and I attended a meeting with representatives of the Canberra Region Cancer Service (CRCS) who manage the provision of oncology and haematology services at the Canberra Hospital. The meeting was called to inform us of the improved arrangements for haemophilia care. Essentially the service has been slightly extended. Now, apart from the dedicated day for haemophilia (Thursdays), it is also possible to obtain non-urgent assistance from nursing staff on other weekdays between the hours of 9am to 5pm. To obtain such assistance, call the 14A treatment room on 62442424 and ask for nurse Sharron Davison. The CRCS is also looking at the policies and procedures relating to the provision of emergency services for haemophilia and hopes to have a draft policy document available for discussion next year.

Haemophilia Conference

Six members of HFACT, Sharron Davison and Phillip Öhman all attended the 15th Australian and New Zealand Haemophilia Conference in Brisbane in October. You can read of the experiences elsewhere in this newsletter.

Fundraising BBQ

Another new activity carried out lately by some of our willing members was the conduct of a fundraising sausage sizzle at Bunnings Warehouse in Fyshwick. This was very successful raising over $1,100 for the group. My thanks go to all who organised and participated in this event, in particular Maria’s father Juan Salcedo, Sharron and Keith Davison and several friends of Tim and Sarah. I would also like to thank our sponsors, Bunnings and Woolworths who provided the venue, equipment and contributed to the food. Below you will find some photos that show how hard the team were working on that day.

Finally, it has been a busy year of negotiations and activities but I feel satisfied that we are gradually making progress on our goals, namely to improve the treatment and care provided to persons with haemophilia in the ACT.

I wish you the very best for the festive season and invite you to join us in a BBQ to start the year on Australia Day in 2010 (see page 5).

Fred Wensing

President
Haemophilia Foundation ACT Inc
Ph: (02) 6291 7920
Mob: 0409-831844
Email: President@hfact.org.au

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Fundraising BBQ

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Introducing Sharron Davison

Hi everyone!

I would like to introduce myself. My name is Sharron Davison and I’m the Registered Nurse who has taken over from Liz. For all of you who are interested Liz is going great guns at the hospice and is enjoying her new role.

I’d just like to tell you a little about myself. I’ve been a Registered Nurse for over twenty years. I have worked in a lot of different areas. My background includes rural & remote nursing, surgical nursing, cardiothoracic nursing and intensive care nursing. More recently oncology, haematology and immunology nursing on ward 14A.

I came to work in 14A back in August 2006 when my body began to object to continual night duty and shift changes in intensive care, so I talked to my husband who is also a nurse and works for the Australian Red Cross Blood Service in the ACT, about what I should do with myself. As you get older your body doesn’t respond well to shift work. I had always had an interest in oncology so I rang up and inquired about work and hence started a new learning curve. The rest is history. When I was approached in 14A to see if I would like to learn about non-malignant haematology, which haemophilia comes under, I said yes. I’ve worked with Liz since the May 2009 review clinic, to learn the ropes so to speak. I must say it’s been an interesting learning curve. I basically jumped into the deep end and began to swim.

I was lucky enough to attend the conference in Brisbane earlier this year and meet the other haemophilia nurses which was really great. I learnt so much there.

Now back to me and a little about me and my interests. I have five adult children, six grandchildren ranging from twelve to two, three dogs and a wonderful supportive husband. We have lived in Canberra for twelve years now and call it home. I have always worked full-time and I continue to do the same here on 14A. I love reading, listening to music, socialising with friends and do cross-stitch.

I just want to let you know that I am available to anyone who needs help or care Monday – Friday 8:30 – 5pm on extension 42424 and as always all day in the Haemophilia Centre room on Thursdays. So feel free to drop in have a chat and let me see how I can assist you. I look forward to meeting you all over time. I hope you all have a good Christmas and an enjoyable New Year or at the very least a good rest over summer. See you all soon.

Sharron

Introducing Phillip Öhman

I moved to Australia in 2001 after a number of years globetrotting, firstly as a businessperson and latterly working in the area of community development. In the years since I have worked in and around the areas of counselling and support, most recently with building industry apprentices. I have a particular interest in medical matters, so the chance of combining support/counselling with a specific type of medical condition was very appealing.

I’ve been on a steep learning curve since joining HFACT but have found the best way to find out about a condition is to ask those living with it – you! I’m already enjoying getting to know people within the haemophilia and related community and look forward to meeting more people as time goes on. I’m generally at the TCH clinic on Thursdays but also available to you at any other time, as needed. Please feel free to call me on 0409 830 472 if you would like to meet up for a chat.

Phil

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15th Australian and New Zealand Haemophilia Conference
Brisbane, 9th to 11th October 2009

The conference began really well with the first plenary session speaker, Dr Michael Carr-Gregg on "Assessing the impact of chronic disease on adolescents - a practical psychological paradigm". Dr Carr-Gregg’s excellent presentation was both entertaining and informative. He spoke about the period of adolescence, the psychological, social and sexual transformations that compound the challenges faced by parents, health care providers and people with haemophilia. He spoke on chronic illness and about the risks that adolescents face, the protective factors, and about personalised treatment strategy as essential to ensuring optimal outcomes. Dr Carr-Gregg drew on extensive research and medical data and also spoke from personal experience, having a child himself with a chronic illness.

Dr Carr-Gregg highlighted the number one risk factor as "depression" and that depression is the "handmaiden of suicide". He asks the question, "What can we do to help?" and set about providing several key strategies in answer to that question, stressing the importance of teaching optimism and listed "8 Secrets of Happiness" to help counteract depression:

1. Count your blessings write down 3-4 things which you are thankful for.


2. Practice random acts of kindness.


3. Savour life’s joys stop to smell a rose.


4. Thank a mentor someone you owe a debt to.


5. Learn to forgive let go of anger and resentment.


6. Invest time and energy in family and friends build strong personal relationships.


7. Take care of your body sleep, exercise, laughing, good diet.


8. Develop strategies to cope with stress and hardships being positive, self talk, religious belief.
   The way you think = the way you feel.

If you would like more information on this topic, you can go to Dr Carr-Gregg’s website:
www.michaelcarr-gregg.com.au .
He recommended several other web sites which are excellent:
www.reachout.com,
www.moodgym.anu.edu, and
www.reachoutcentral.com.au

Plenary 2 was also excellent. The session was entitled "Good joints for a better life" presented by Kathy Mulder, Dr David Kandiah and Dr Brett Halliday. Areas covered were MRI’s, radiosynovectomy, understanding rheumatology - inflammatory processes. Whilst some rays of hope were there, most of it continues to be bad news for people with joint damage. A startling fact was made, that it only takes one bleed to cause damage to a joint.

I particularly appreciated the personal reflections given at the "Living with Hep C" and "Living with HIV" sessions on day two of the conference. Both were very moving testimonies and helpful in understanding how treatments impacted on them and just how they managed and coped under difficult circumstances. I believe these personal sessions were beneficial to many members in attendance, and will be strongly recommending we have more of these at future conferences.

All in all, a very good conference and I was pleased to have been able to attend. I encourage you, if you have never attended one before, to do your best to make it to the next one in Sydney 2011.

Maria Wensing

Editors note: Thanks to the hardworking staff of the HFA, the presentations and abstracts for the 2009 conference are now available to download from the HFA website. Go to www.haemophilia.org.au/eventsandawards

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15th Australian and New Zealand Haemophilia Conference (continued)

As usual there was a great mix of presenters and participants at this year’s HFA conference. The theme of life challenges was met with a variety of topics ranging from the practical to the inspirational and presented with expertise by medical professionals, administrators as well as those with haemophilia and their families.

Some of the highlights for me were the opening speaker Dr Michael Carr-Gregg who founded CanTeen, has written numerous books and, among many other things, is the ‘Agony Uncle’ for Girlfriend magazine. He gave us a wonderful, hugely entertaining and amusing insight into the mind of an adolescent but also some very practical ways of dealing with the very serious and often sad issues of bringing up a child with a chronic illness.

The session on the treatment and management of inhibitors is always of interest to us personally as we have lived with this ‘haemophilia enhancement!’ for many years. It’s probably a little disappointing to learn that treatment of inhibitors and a genetic cure are never moving along at quite the pace we would like them to be. I think we tend to get a little impatient as we often hear tid-bits of ‘break-throughs’. I think there’s a little way to go to the end of the tunnel just yet but we are extremely grateful for the work that people are doing in the medical profession and the quality of treatment available to us in the developed world. Which brings me to the women’s breakfast with a presentation by Kathy Mulder.

Her contact with sufferers in third world countries brought home to us how lucky we are even if we have a way to go to finding a cure and how we can all help each other, even from so far away.

One other session which I particularly enjoyed was ‘Understanding genetics and reproductive choices’. There were four speakers, three of whom were professionals who gave an interesting overview and history of genetics and choices to be considered when undertaking genetic counselling. The fourth speaker, Jane Devlin, who has recently been through the process, gave a very moving and sensitive account of her personal journey. I believe that my own family is close to having to consider some of the same issues but I don’t honestly think that I was aware of the many questions and range of emotions which we might face when making those decisions. The moral issues, the effect on other family members and the long term effect of any final decisions can lead you on a heart-wrenching struggle to find your own best answers. I am grateful to Jane for sharing her story and I found her wisdom and sensitivity to be an inspiration to me.

If you’ve never been to a conference before, I’d encourage you to attend at least one. The next in Sydney will be more accessible and as fun and educational as usual. Hope to see you there in 2011!

Lorraine

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15th Australian and New Zealand Haemophilia Conference (continued)

It was good to attend another haemophilia conference. I’m not sure how many I have been to – a few as an attendee and some just for the social occasions, while Ron attended the conference proper. I have noticed how the conference has evolved over the years and how there is always something different to take home from each of them. It was good to see a number of younger people attending the conference sessions.

One of the highlights of the conference was the opening address by Dr Michael Carr-Gregg. The thing I most remember about it is the information that the male brain does not reach maturity until around 25 years of age, “with a good wind behind them”, and 23 years for females. This means that they do not have the brain development to always make the wise decisions we, as parents, would like them to.

The number of States where factor is home delivered was an eye opener. Most States are already taking advantage of the service provided by some of the drug companies. (HFACT will be advocating that this be made available in Canberra.) People who use the service all said that it made a big difference to their life.

It seems that all States in Australia, and the U.K. & Canada too according to the international speakers, are facing similar issues around visibility, provision of comprehensive care and funding. As there are fewer presentations to accident and emergency the visibility and knowledge of haemophilia is lessening.

On Saturday evening there was a brief but moving remembrance ceremony for those who have died from haemophilia and related condition. I thought it disappointing that it wasn’t mentioned at the conference and that the background and history of the ceremony was not made known to conference attendees. It was started to commemorate those men and boys who died from HIV and then extended to cover all who died with haemophilia.

I would like to thank the HFACT for providing me with the opportunity to attend the conference as a delegate.

Jenny Lees

MedicAlert

One day when I was a university student (a very long time ago) I cut myself with a scalpel in a science laboratory. My lecturer was horrified to learn that I had haemophilia and asked me how people would know what to do in an emergency if I were unconscious or unable to speak. She then showed me her MedicAlert bracelet.

MedicAlert is an international foundation that started in 1956 after a teenager, Linda Collins, almost died as result of a tetanus injection to which she was allergic. Her parents took to pinning a note to her coat whenever she was away from home. Linda came up with the idea of wearing a silver bracelet with her allergy engraved on one side and the symbol of Aesculapius, the Greek god of medicine on the other.

The MedicAlert bracelet (or necklet) and identity card provide brief information for emergency personnel that can save your life in an emergency. They can also call a 24 hr number and quote the membership number on the bracelet, giving them access to a personal medical emergency information and identification service run by the SA Ambulance Service.

© Australia MedicAlert ® Foundation - used with permission

Information about MedicAlert Australia can be obtained by calling 1800 88 22 22 or by visiting www.medicalert.com.au.

To encourage members who have a bleeding disorder to wear a MedicAlert bracelet, HFACT subsidises the cost of becoming a MedicAlert member. If you wish to avail yourself of this subsidy, please contact our counsellor or President.

I never go out without mine.

Ron Lees

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Women’s Wisdom & Genetic Counselling

Women’s Wisdom Afternoon Tea at Jenny’s, July 25th 2009.

We all met at Jenny Lees’ home on a sunny Saturday afternoon. Linda Warwick, Senior Genetic Counsellor from TCH, was invited to provide an update on genetics testing and genetics counselling services available for individuals, couples and families. Linda provided an insightful overview of genetics in relation to inherited disorders. She was able to tailor the information specifically related to haemophilia, which provided an opportunity for open discussion for the attendees to discuss their personal experiences. Such as:

• Approximately 80% of mutations occur with the female (mother), if no previous history. Usually each mutation is 4-5 faulty genes.

• Cascade testing can be conducted – if you wish to know where the mutation occurred (family tree).

• Molecular testing and clinical history is important to be able to ascertain results sooner. If possible, use a positive sample from a member of the family with haemophilia or carrier status.

• X-linked deactivation may explain the variation between factor levels in carriers.

• Various influences can potentially affect the carriers factor levels: lower factor levels - if O blood type, taking the oral contraceptive, exercise, inflammatory response.

• When is it appropriate to have female children tested and results disclosed? As it depends on many variables, this decision will vary between family’s and individuals. Seeking advice from the genetics counselling service is the best place to start.

• Some choices for carriers and their partner in having children – IVF options, genetics testing during the pregnancy, or not.

Christine, Patty, Maria, Jenny, Wanda, Clare, Lorraine, Janet, and myself wish to thank Linda for providing a very informative session.

Clare had announced that she was retiring and we all wished her all the very best in her retirement and thanked her for all her support, encouragement and counselling she has provided all of us in the past few years. A bunch of flowers and card signed by all was presented to Clare.

A note for carriers it is important to remember to consult and discuss your carrier status with your doctor if you are planning to have any medical procedures or surgery. Your factor levels may need to be tested and arrangements may need to be made for factor to be made available for you, if required. It is important to start to advocate for yourself and continue to advocate for your family member/s with haemophilia.

Kate McKenzie, Carrier

L to R: Clare Reeves, Maria Wensing, Jenny Lees and Wanda Haponik

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Email

Congratulations to
Chris Wensing

DATES TO REMEMBER