The latest news from the South African Haemophilia Foundation

PLEASE NOTE: Head bleeds are the main cause of death in haemophilia. If a headache persist FOR MORE THAN A DAY a PWH should SEEK MEDICAL ADVICE as SOON AS POSSIBLE.

How does it feel to be a haemophiliac and have your first born who is a haemophiliac

How does it feel

Read the story in the the latest Central newsletter

Cadiz Steenberg Classic Golf week

SA Haemophilia Foundation Western Cape was a beneficiary of the Cadiz Steenberg Classic Golf week in 2010. This donation enabled SAHF to purchase 4 motorised wheelchairs and 2 standard wheelchairs for use by PWH and persons with bleeding disorders. Seen in the photo are members of the Cadiz Foundation, Steenberg Golf Club and SAHF at the handover of the wheelchairs to 3 very grateful patients. SAHF is grateful to all the sponsors and especially to the members of Steenberg Golf Club.

Cadiz Steenberg Classic Golf week

January 2011

Gauteng NNHF Haemophilia Camp – 14 to 16 Jan 2011

Reflections by Tony Roberts (PwH, SAHF member and WFH Psychosocial committee member)

The heavy downpour of predicted rain could not dampen the spirits of 19 young men who arrived at the Happy Acres Camp, in Magaliesburg, South Africa, for a weekend of learning through activities. From the start we could sense that this was going to be a weekend to remember and cherish for a long time. We were not disappointed. We were not disappointed. Happy Acres is a well run Adventure and Education Camp that specializes in school curriculum-based activities, related mainly to the Natural Science syllabus. It also caters for groups wishing to experience the enhancement of leadership skills through activities in nature. The latter was the reason why we had ventured into this part of paradise, nestled amongst a plethora of hills and streams. To download the Tony's complete report on the activities that took place at the Gauteng NNHF Haemophilia Camp, please click here.

May 2011

World Haemophilia Day 2011

World Haemophilia Day is celebrated annually on April 17. As part of SAHF celebrations in Western Cape this year a picnic was organized at Mnandi Beach on Saturday 16 April. It was a very windy day but those who braved the weather enjoyed themselves. In the following week Haemophilia Awareness days were held at Red Cross Hospital, Tygerberg Hospital and at GSH in Hospital Street – all very successful. Various SAHF members in Cape Town and Johannesburg were interviewed on radio and TV. Amongst other activities around the country a dance competition was held in Johannesburg, a group from Kimberley travelled to Sutherland for a parade through the streets on Saturday morning 16 April and a group of young PWH were taken on a visit to Ushaka Marine World in Durban. Well done to all those involved. To download the nationwide report on the activities that took place on World Haemophilia Day, please click here.

Fear of the unknown – A life story of a mother having a son with haemophilia

Fear of the unknown is pretty common. Having a child with haemophilia can make it a daily part of life. With our first child, Samantha, there were no bumps in the road. When Lucas was born two years later, it seemed that everything was fine as well. But only two days later, after a routine procedure caused an unusual amount of bleeding. Lucas was diagnosed with haemophilia.

Because Lucas's haemophilia was caused by a spontaneous mutation, we were caught completely of guard. I did not even know how haemophilia was spelled at the time, let a lone anything about the condition! I was terrified as I watched the doctors try to find a vein on our fat little, ten pound, roly-poly baby. To read the full story, please click here.

Womens Group: 11 June

Two very successful meetings of the group were held - on 15 January, at which Sr Cruickshank was the speaker, and on 26 March when Tony Roberts spoke on Positive Discipline in Haemophilia. Refreshments were kindly provided by NBI. The next meeting is scheduled for 11 June when Sameer Rahim, Chief Physiotherapist at Red Cross Hospital, will speak on the Importance of exercise and sports in haemophilia. We hope to see many more of you there – a lucky draw with prizes will be on offer. Meetings are held in the Tafelberg, Hospital Street on E Floor, GSH.

Rock Leadership Training Camp : 14-16 October 2011

A camp will be held in Cape Town from Friday 14 to Sunday 16 October at the NGK camp site, Noordhoek Village. The camp is open to all PWH in the age group 14 to 30. Tony Roberts will be the facilitator. Transport will be provided from Red Cross Childrens Hospital if required. If you would like to be included in this camp or can assist in any way please contact Sr Reinett Olivier (083 2586163) or Judy Butler (0837117287). This camp will be funded by a grant from Novo Nordisk haemophilia Foundation as part of the Community Award 2010 won by Sr Cruickshank.

WFH Multidisciplinary Symposium : 25-26 November 2011

This symposium will be held in Johannesburg following the MASAC meeting taking place on 24 November, venue Protea Hotel OR Tambo, Johannesburg. Guest speakers will include Drs Alison Street who is the WFH Vice-President (Medical) and is from Australia, Flora Peyvandi from Milan, Rezan Abdulkadir from Royal Free Hospital in London, and Mr Brian O'Mahony, past president of WFH.

Nurses Training 2011

Two very successful nurses training courses have been held, one in East London in February and one in Nelspruit in May. A total of 56 nurses were trained. A Physiotherapy training course was held in Port Elizabeth in February and a one day Doctor's training course in Mpumulanga in May.

Sincere sympathy to Helene Kessler, Richard and Andrew on the death of their husband and father Tom Kessler on 28 March. Tom was actively involved in SAHF for many years, first in Johannesburg and then in Cape Town, and was instrumental in establishing the Medically Acquired HIV Institute Trust Fund. He was a stalwart supporter of SAHF and will be greatly missed. RIP Tom.

Factor Status

NBI are currently upgrading their facilities. Careful planning has ensured that there will be adequate stocks of factor throughout this period. PWH are requested to postpone any elective surgery until the second half of 2011 and to use their factor carefully without compromising care.

Wheelchairs

SAHF Western Cape has received a donation from Steenberg Golf Club Charity week which will enable us to purchase 4 wheelchairs. These will remain the property of SAHF but will be allocated to needy patients and should greatly improve the quality of their lives. SAHF has never before been able to offer this service to PWH and is most grateful to Steenberg Golf Club members for their generousity.

Transport Project

On 20 May in Johannesburg a project will be launched to assist PWH to get to hospital timeously for treatment. The project will be funded by Novo Nordisk and a group of 10 patients from Johannesburg will form the pilot study. If the project is successful the system will be extended to other major centres. If you would like to be included in this project please ensure that your clinic has your correct contact details.

WFH Congress 2012

The next WFH congress will take place in Paris from 8-12 July 2012. Criteria for attendance available from Judy.

Subscriptions

Subscriptions for 2011 are now due – thank you to those who have already responded. Subscriptions are R20 per annum and can be given to Sr Cruickshank or Sr Olivier at the clinic or posted to: SAHF P O Box 172, Plumstead 7801.

Patient News

PWH with medical aid are reminded that they need a repeat prescription to send to the chronic medicine dispenser every 6 months. PWH from out of the metropole will need a hospital (GSH, TYG or RXH) out-patient prescription to take to the hospital/clinic pharmacy in their area, so please do not leave the HCCC clinic without that. All these prescriptions by law are valid for 6 months ONLY. PWH need to visit the HCCC 6 monthly with their bleeding records to see the doctor and renew their prescriptions. This includes medical aid and hospital PWH.

When attending clinic PWH are requested to please arrive suitably dressed for a physical examination i.e. wear shorts under your jeans/trousers.

If you have changed your address/phone number please remember to update your details with the clinic staff.

NB It has been agreed by the Provincial authorities that in an emergency an ambulance will take a PWH directly to the tertiary hospital. If there is a problem with the ambulance driver contact Sr Cruickshank or Sr Olivier.

Clinics

The clinics are all running well and are visited by sisters every week. ALL PATIENTS WHO HAVE A BLEEDING DISORDER need to keep in contact with the clinics and be seen on a regular basis. The haemophilia sisters like to see the patients regularly in order that:

  • they can keep in contact so that when problems arise they become easier to manage;
  • they can improve their service delivery to all the patients;
  • they can update patients on new advances/ ideas in haemophilia care.

Please contact the clinics direct for appointments at the following centres.

  • Groote Schuur Comprehensive Care Clinic (HCCC)
  • Fridays 08h00-12h00 in E5. Ph Elaine (021 4043084) for appointments.
  • Red Cross Comprehensive Care Clinic (HCCC)
  • Tuesday 08h00-11h00 in G1. Ph Sr Felicity Douglas (021 6585185) for appointments.
  • Tygerberg Haemophilia Comprehensive Care Centre (Paediatric)
  • One Tuesday per month in C3A clinic in Paediatric Out-patient Department. Emergencies will still be seen at the haematology ward G3 open 24 hours. Phone Sharon for an appointment at 021 9384539.
  • Tygerberg Haemophilia Comprehensive Care Centre (Adult)
  • One Friday a month in X Block. Phone Kallie 938 5888 for an appointment.

IMPORTANT
It is vital if a PWH is admitted to any hospital or institution that Sr Cruickshank or Sr Olivier be notified immediately in order that they may monitor the patient's treatment and progress.

Do not hesitate to contact Sr Anne 082 788 1038 or Sr Reinett 083 258 6163 with any queries.

A mother's thoughts - Poem