NEWSLETTER

Presentation by Dr Sue Russell

On 1st August 2007, HFACT had the honour of hosting Dr Sue Russell.   Dr Russell is a paediatrician at the Westmead Children’s Hospital and specialises in caring for children with bleeding disorders and cancer.   Dr Russell was kind enough to give a presentation on the Changes and Developments in the care of Patients with Haemophilia to members at the Wensing’s house.

Dr Russell’s presentation focused on a number of fundamental changes in technology, treatment methods and practices that have led to an improved quality of life for infants and children born with haemophilia in the last ten years.  Listed below are some of the changes that Dr Russell talked about:

• Elimination of risks of viral transmission by solvent detergent and heat treatment.
• Recombinant factor products replacing plasma derived factors.
• Primary and secondary prophylaxis compared with treatment on demand.
• Use of a Port-a-Cath to deliver prophylaxis in children.
• Continuous infusion factor for operations compared with bolus doses.
• Use of MRI scans to look into detailed joint damage.
• Immune tolerance schedules to eradicate inhibitors to treatment factors.
• Introduction of Factor VIIa in the treatment of bleeds in patients with inhibitors.
• Factor VIII gene mutation analysis for carrier testing and ante-natal diagnosis.
• Development of anti-viral agents for treatment of Hepatitis C.
• Development of new anti-HIV drugs.

The event was well attended by members representing a wide cross section of the haemophilia community in the ACT and surrounding districts.   Individuals asked a variety of questions and a great deal of discussion was generated throughout the presentation.   Dr Russell’s presentation highlighted how different life is now for young children and their families growing up with haemophilia.   It was very encouraging to see treatment options available for haemophilia complications in most centres where none existed 10 yrs ago.

It is through these informal gatherings that the haemophilia community can learn and share information with highly qualified health professionals who willingly give their time to discuss these issues outside the hospital environment.   On behalf of the HFACT and its members, I would like to thank Dr Russell for taking the time to meet with our small group.   I would also like to thank Fred and Maria Wensing for hosting this worthwhile event.

Joe Guarnieri

Secretary, HFACT

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The arrangements for the 14th Australian & New Zealand Haemophilia Conference, to be held at the Hyatt Hotel in Canberra from Thursday 4th to Sunday 7th October are going well.

At this stage, we have sufficient volunteers for all of the support that will be needed.

The conference programme is interesting and there will be plenty of opportunity to mix with guests who will be coming from all parts of Australia and New Zealand.

If you have not registered for the conference but are still interested in going, there are some funds available to subsidise the registration of HFACT members.   If you are interested contact Clare (0409-830472) or Fred (0409-831844) soon.

Two special events, which are part of the conference programme, are open to others to attend even if not attending the conference sessions.

Remembrance Service

The first, is a Remembrance Service to be held at 6.30pm on Friday 5 October in Nara Park (behind the Hyatt) remembering those persons with haemophilia who have passed away.

Gala Dinner

The second is the gala dinner at the Hyatt starting at 7.30 pm that evening.   The dinner includes music provided by a band which includes one of our own members.

Come and join us at the gala dinner!   Tickets for the dinner are $55 per head and can be ordered from HFA up to a week before the conference.

HFA Conference Raffle

Raffle tickets are now available for the HFA raffle with net proceeds from all tickets sold by HFACT members being returned to HFACT.

Tickets are $2 each and are in books of 10 tickets.   All ticket butts and money must be returned to the HFACT by 26th October.

If you are able to sell tickets to family and friends, please telephone or email Fred and state how many books you require.

ACT Permit Number: ACT R 07/00169

1st Prize - Crown Melbourne Package RRP $730.00
Overnight accommodation at the Crown Promenade with breakfast for two and valet parking, $150 voucher at Breezes and $250 travel voucher.   Accommodation & meals kindly donated by Crown Melbourne.

2nd Prize - $500 Harvey Norman Voucher
Kindly donated by Harvey Norman

3rd Prize - Prince of Wales Hotel Package RRP $350
Overnight accommodation at the Prince of Wales Hotel, St Kilda Melbourne with breakfast for two.  Kindly donated by Juanita Scott Travel.

4th Prize - Handmade Quillow RRP $350
A beautiful handmade quillow, a quilt that can be converted into a pillow.   Donated by HFACT and made by volunteer crafts people from the Canberra region.

5th Prize - $50 I-Subscribe voucher and $50 Coles/Myer Gift Card
Voucher kindly donated by I-Subscribe

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Mid-Winter Dinner

Len's Ghana Trip

Our mid-Winter dinner, held in June was well attended.   The fireplace was warm and there were some nice dishes brought along to share.

Relaxing after dinner
L-R: Joe, Terri, Julia, Len, Mary-Lou, Albert and Lorraine

Len also informed us that he and Mary-Lou were about to return to Ghana for another visit to the orphanage as part of a project to provide them with a well.

Chris and Len

Chris and His Travels

The mid-winter dinner was also an opportunity to farewell Chris Wensing who was about to leave on a European holiday.

Chris Wensing resigned his place on the committee, said good-bye to his family, and has taken off for greener pastures in Europe.

Considering that Chris has severe Haemophilia, planning and organising this trip was no trivial matter.

In order to keep up his regular prophylactic doses of clotting factor for six months, he had to work out how to take 70 bottles of treatment, along with water, swabs, syringes and sharps container.  This was a real challenge given that he is only travelling with a back-pack!

Well, somehow he managed to squeeze the lot into a space the size of a shoe box.   This was possible by discarding the cardboard boxes and papers and wrapping the bottles of factor and water neatly with electrical tape.

Chris pondering 70 bottles of treatment

Another important thing that Chris did in preparation for his long trip was to work on his fitness and muscle strength. With good muscle tone he will have some protection from injuries that arise from all that walking which he expects to do.

Chris with his back-pack on the day he left Australia

Chris on the island of Santorini

Fred Wensing

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Are You Contemplating Surgery?

Surgery in people with haemophilia (or von Willebrand’s disorder), even if that haemophilia is mild, can be complicated by the risk of excessive bleeding.  Not only can that affect the success of the surgery but it could lead to complications or result in the need for a blood transfusion.

If you are considering surgery for any reason, including dental procedures or minor surgery, it is important that you consult a haematologist at the Haemophilia Treatment Centre.   He or she can advise you about the best way to manage the bleeding during and after the surgical procedure.   It could involve continuous infusion of clotting factor or a large dose shortly before the surgery.   In most cases it will also be necessary to continue with factor replacement therapy for a period after the surgery.   Testing and monitoring will also be an important part of the treatment.

The Haemophilia Treatment Centre also needs to know about the planned surgery so that they can ensure that sufficient supplies of the relevant blood clotting product will be available.

Plans for non-urgent surgery (for patients being treated in NSW and the ACT) are assessed by the Clinical Review Committee of the Haemophilia Advisory Council of NSW and ACT, consisting of haematologists drawn from the major haemophilia treatment centres in NSW and ACT.  

The committee takes into consideration the surgical need, medical status of the patient and the availability of supplies of blood clotting products.   Scheduling of procedures may result in a delay in surgery for some patients.

It is the policy of the Clinical Review Committee that all surgery for patients with haemophilia is to be carried out under the supervision of a recognised Haemophilia Treatment Centre.   In the ACT this means that any surgery would need to be carried out at the Canberra Hospital only.

Note: This information is provided for the benefit of members and does not constitute medical advice to any particular individual.  For diagnosis or consultation on a specific medical problem, you should contact your haemophilia Doctor or Nurse or your local treatment centre.

Fred Wensing

President, HFACT

NSW Family Camp

The Haemophilia Foundation NSW is holding another of its very popular family camps from 16th to 18th November.

The venue is the Sydney Academy of Sport in Narrabeen.   There will be supervised activities for all ages throughout the entire weekend.   Apart from the structured activities, the camp is a great way to meet up with new people in the haemophilia community and catch up with friends.

HFACT has some funds available to assist members who would like to attend the camp.   Fred Wensing has further details and an application form from HFNSW.

If you are interested in going please contact him or Clare Reeves as soon as possible so that HFNSW can be informed that we have members who are interested in attending.

Images from the 2004 NSW family camp

Acknowledgement

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