Namibian Volunteers & South African Haemophilia Foundation (SAHF)
A man and a bicycle to raise awareness for Haemophilia (Windhoek to Cape Town)
“No person born with a bleeding disorder should have to live with pain, disability, or the prospect of early death as excellent treatment is available. However it still occurs because of lack of knowledge or mis-diagnoses, distance to treatment centres or financial discrimination resulting in lack of treatment,” says Bradley Rayner, SA Haemophilia Foundation Chairman who himself is a severe sufferer of Haemophilia.
SA volunteers reach out to Namibia in honour of a global icon and a hero to many around the world, the late Nelson Mandela, on August 27th, a day after Namibia’s “Heroes Day”, Eugene Brookes an adventure cyclist from Cape Town will deliver a letter of support to volunteers in Namibia and commence his journey by bicycle from Windhoek, Namibia, to raise awareness about bleeding disorders, and distribute treatment guidelines, emergency posters to hospitals along his journey. It is also hoped that the awareness campaign will reach healthcare policy makers to inform them of the need to improve diagnosis and treatment of people with these disorders. SAHF have won two international awards for collaboration, the most recent in May for assisting Mauritius.
When asked of Eugene why he got involved? “Most of us only hear about Haemophilia when we around people like Bradley who is passionate to improve access to care, especially for those not close to treatment centres. The sad part is that Haemophilia does not have the same support and attention as some of the more spoken about medical conditions like HIV, TB, Diabetes. Yet it is a very treatable condition. So Bradley and I crafted an awareness campaign around our passions; viz; Haemophilia and cycling,” says Eugene Brookes.
Robert, a 37 year old married man and a father of 2 children from Namibia would like to see trained Health care professionals and access to factor concentrates at the state hospitals.
Christo, another person with Haemophilia would also like to see treatment improve in Namibia and is prepared to share his story living with the condition.
The awareness campaign will include training of Namibian healthcare workers by a SAHF health care worker at hospitals in Windhoek. Radio and media initiatives are scheduled to reach as many people since many remain undiagnosed and many receive inadequate treatment, no treatment, or treatment does not work due to a complication called inhibitors. It is estimated that 1 in 1000 people have a bleeding condition.
The World Federation of Haemophilia (WFH) research shows that government and society benefits from an investment in children’s health when, as adults, they are able to work, contribute to the community and raise a healthy family. Therefore, the WFH promotes a global effort to secure appropriate care and treatment products for everyone with a bleeding disorder, no matter their circumstances or where they live.
Without treatment, haemophilia sufferers bleed with consequent continual pain, disability, isolation, and resultant premature death. People with hemophilia use treatment products to improve blood clotting to stop or prevent a bleeding episode. People with Haemophilia have a higher quality of life today than ever before.
“Treatment for all means all people with bleeding disorders, including inhibitor patients should have access to safe and effective treatment, until there is a cure. Meanwhile, safe products, proper diagnosis, Haemophilia management, and care by trained specialists should be available. All of this is possible and South Africa has the expertise to assist Namibia“. Says Bradley
“Access to “treatment product for all” haemophiliacs including those with inhibitors is the absolute minimal care for these patients, “says Dr Chris Sutton of the Medical and Scientific Advisory Council of the SAHF who visited Namibia earlier this year and gave an introductory talk to Health professionals on the treatment protocol.
The SA Haemophilia Foundation is a volunteer organisation and has been operating for approximately 40 years and is part of an extensive global network of volunteers advocating for Haemophiliacs and related bleeding disorders.
Objectives of the SA Haemophilia Foundation are:
- Promote access to early treatment for People with Haemophilia. Promote home based programmes!
- Expand outreach programs where possible – ROCK “Reach Out Centres for Kids”- more nurses!
- Educate People With Haemophilia and families in the management of Haemophilia
- Facilitate knowledge and skill acquisition for the care of haemophiliacs by the health professional
- To increase general Awareness of Haemophilia
- To improve the haemophilia care infrastructure including advocating for establishment of Comprehensive Treatment Centres
- Support the work of the Department of Health to improve the Health Care Delivery System
|South African Contact||Namibian Contact|
|Secretary: Judy Butler||Volunteer: Dr. Regine Redecker|
|Telephone/Fax: +27 (0)21 785 7140||Telephone: +264 61 252112
|Email: firstname.lastname@example.org||Email: email@example.com|
|National Chairman SAHF: Bradley Rayner|
|Cell: +27 (0)82 882 6420|