Jun-15-HFQ-Newsletter-43
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Issue 43 Winter 2015 Newsletter of Haemophilia Foundation Queensland From the President Hello everyone, remember 1-3 recovery and minimise further October is the 17th Australian & damage, rest is an important When a bleed is occurring there New Zealand Haemophilia & aspect of treatment. Doctors and is often frustration in trying to related bleeding disorders Physiotherapists know form first- rest, we all know that feeling. conference – see you there. hand experience that better Sometimes it’s difficult to avoid outcomes are achieved using a joint that is bleeding and This month I when rest is included as part can often lead to time off school want to of the treatment plan – just or work to recover. It is clear reinforce the give it time, rest helps stop from my experience that rest clear need re-bleeding (including small helps, take wrists as an example for rest after micro-bleeds that can be – try using the other hand and a bleed, undetected) from occurring with a little practice it’s amazing many of us and also ensures that a joint how you adapt even to the point treat and is less likely to have of being able to use either hand move on with life without giving permanent damage. There is to self-infuse factor which has the affected bleed time to heal. evidence to show that walking on helped me on many occasions. We may consider the bleed all or using a blood filled joint can sorted but tissues damaged has severely increase damage to An important point to note here is occurred and to get the best cartilage. To next page Inside this issue: From the LCCH Team 2 New Cycling Record 8 5 Ways to Avoid a mid life Crisis 14 Women Carriers Forum 4 Living with vWB 9 New Hep C Drugs 16 LifeTec Visit 5 Kids Issues 10 Gold Coast Conference 16 LCCH Visits and meetings 5 Inhibitors & Mortality 12 HFA Membership Renewal 17 Recording Factor Usage 7 Gene Therapy Advances 12 Stoping HIV 18 Teaching the Drs of tomorrow 7 Maximising your Dr’s visit 13 Health Updates 19 Page 2 The ‘H’ Factor Presidents Message Continued... that medical advice I have been about your treatment plan, it’s as given does not recommend easy as picking up the phone for ambidextrous training for children a chat or making an appointment aged 7 years or under. Up to this for a review – we all want to avoid age children’s developing brains progressive joint damage! need to first acquire initial fine motor control as well as language and writing skills David Stephenson without adding further President HFQ …..Advocacy, complications. Education, Health promotion, Support So talk to your treatment centre A message from the QHC team at Lady C Many of you will know there are are worried about an injury questions. still some issues being resolved have treated a bleed at home with the systems at Lady Cilento How to make or change Childrens Hospital. are taking your child to the appointments at LCCH hospital Phone the call centre - 1300 Many of these are about he 762 831 hospital itself and nothing to do Please email or text the LCCH You will need a current with your HTC team. HTC referral to the consultant (Dr For queries about: Simon Brown) The following are suggestions for supplies when and how best to coitact thye As much as we would like to paediatric team at LCCH. pharmacy assist you in this matter, the HTC upcoming procedures staff are unable to access the Please call the LCCH HTC school plans systems for booking When you: travel letters appointments. are worried about a possible bleed general bleeding disorder Sorry. Disclaimer: All articles, advice and information included herein are written by various individuals who volunteer their input. While the ‘H’ Factor magazine puts every effort into providing honest and accurate information and where possible, reference to research articles are made to validate content, it cannot be held liable for any errors or inaccuracies in published articles. The views expressed in this newsletter are not necessarily the opinions of the Editor, their associates or supporters. Publication of contributions will be at the discretion of the Editor. Any articles containing racist, sexist, homophobic or defamatory remarks will not be published. Other original contributions and letters are welcomed and encouraged. Articles in the ‘H’ Factor cannot be reproduced without permission. Issue 43 Page 3 ABOUT HFQ QUEENSLAND HAEMOPHILIA The Haemophilia Foundation of Queensland (HFQ) provides advocacy, education and support for people in Queensland affected by inherited bleeding CHILDREN’S CLINIC disorders. The Foundation employs a part time manager and is guided by a Board of Directors PAEDIATRIC CLINIC STAFF (LCCH) which meets monthly. Switch: 07-3068 1111 Haemophilia Mobile 0438 792 063 Dr Simon Brown — Haematologist We can be contacted on mobile 0419 706 056; or via post at PO Box 122 Fortitude valley, Qld 4006 Haemophilia Registrar Dr Melanie Jackson Joanna McCosker — Clinical Nurse Consultant Members of HFQ are entitled to benefits, including Wendy Poulsen — Physiotherapist subsidies on: Moana Harlen — Senior Psychologist Medic Alert bracelets (50% discount) Electric Shavers (up to $75 off) Contacting the Clinic Please call the mobile for urgent enquiries (during office hours only). For all non-clinical/non-urgent Supportive footwear (75% off) enquires please email [email protected] Discounted Movie Tickets After hours—call switch and ask to speak with on-call haematology consultant or present to the emergency department Appointments — Contact the Administration Officer for HFQ Management Committee Haematology or 2e outpatients for queries regarding clinic appointments Haemophilia Outpatient Clinic — Dr Simon Brown — held in 2e President ... ... Mr David Stephenson outpatients Level 2, Thursday afternoons 1.30 – 3.30pm Vice President ... Mr Adam Lish Contact the Administration Officer for Haematology Department Secretary ... ... Mrs Leanne Stephenson Treasurer ... ... Mr Peter David ADULTS CLINIC Members ... ... Mr Craig Bardsley Mr Robert Weatherall ADULT CLINIC STAFF (RBWH) Mrs Sarah Hartley Dr John Rowell — Haematologist 3646-8067 Dr John Rowell Beryl Zeissink — Clinical Nurse Consultant 3646-5727 Mr Erl Roberts Olivia Hollingdrake – Nurse (Part time) 3646-5727 HFQ Delegates to HFA After Hours — Page Haematologist 3646-8111 Mr Adam Lish & Mr David Stephenson Rebecca Dalzell — Physiotherapist 3646-8135 Acknowledgements Michael Hockey — Physiotherapist 3646-8135 Maureen Spilsbury — Advanced Social Worker HFQ is grateful for the support of our patron: His (Mon-Thur) 3646-8769 Excellency the Honourable Paul de Jersey AC . Desdemona (Mona) Chong – Advanced Psychologist (Fridays) HFQ programs and services are funded by the Queensland Government. Contacting the Clinic Please telephone in the first instance. Appointments 3646-7752 or 3646-7751 or speak to Beryl Internet Haemophilia and Genetic Clinic — Dr John Rowell — Wednesdays 1.30pm Find us on the web at www.hfq.org.au or at our Haemophilia/Orthopaedic Clinic — Dr John Rowell and Dr Facebook page at www.facebook.com/HFQLD Brett Halliday — 9am every four weeks OUTREACH CLINICS Gold Coast Hospital (9 Oct –Adults), Toowoomba General Hospital (14 May), Nambour Hospital (15 June), Cairns Base Hospital (11 August) & Townsville Hospitals (10 August): Book through Joanna at LCCH and Beryl at RBWH Page 4 The ‘H’ Factor A Day for the Women 1 May 2015 was a long-awaited mighty storm forecast (remember with one another in an informal day for many of us. A full-day that recent Friday when you took and respectful manner. The first workshop was organised for four hours to get home after part ended with the sharing of women who carry the severe work?) did not stop a group of 25 personal testimonies by four haemophilia gene (women heroic women from rocking up at women in the audience about carriers) to come together in a the Kedron-Wavell Services Club their unique journey with regards safe and confidential for the workshop. The strong to relationships, family planning environment to openly share their turnout demonstrates how keen and raising children. unique experiences with one another The second part and learn from was informative in various individuals. nature. It consisted This long-awaited of presentations by workshop was invited medical organised by the experts (who also Queensland made it to the venue Haemophilia Centre despite the storm!) (the Centre), about genetic together with counselling, IVF support from the processes/options Haemophilia and haemophilia- Foundation related updates. Queensland (HFQ) While largely and funding from a didactic, participants Changing also had the Possibilities in opportunity to raise Haemophilia® Grant by these women who carry the questions and clarify issues with NovoNordisk. It had been severe haemophilia gene were to the respective speakers. advertised through various come together in such a setting. means – the newsletter, the HFQ FEEDBACK Facebook page, mail-outs, word- WORKSHOP CONTENT Early feedback from participants of-mouth and at clinics, with the We wanted the workshop to be has been greatly positive. Many hope of capturing as many both interactive and informative. participants came up to us women carriers as possible. We started with the interactive privately to thank us for the part first, with an ice-breaker and workshop. They generally WHAT HAPPENED ON THAT a goal-setting activity. Thereafter, highlighted the value of being DAY women were divided into groups, able to connect with other First to arrive on-scene was according to their current life women carriers, being able to actually Graham from HFQ! stage (i.e. women who do not yet hear one another’s stories and Armed with his multi-media have children, women who have learn from one another. It was props, logistics and other children with haemophilia, and also encouraging to hear that paraphernalia, he single- grandmothers/women of adult regional participants (some had handedly set up the area to make children who have seen the to fly) said it was time well-spent.