Welcome to the South African Haemophilia Foundation
These web pages are part of our commitment to promote the welfare of all persons with haemophilia and similar conditions in South Africa and elsewhere. We hope it will help provide a better understanding of this inherited, lifelong bleeding disorder which affects males almost exclusively.
We welcome your comments. Please contact the Haemophilia Foundation by e-mail, or write to us at P O Box 172, Plumstead, Cape Town, 7801, South Africa.
You can also find out more about the World Federation of Haemophilia here.
Central Newsletter October & November 2013
WFH 2014 World Congress - Melbourne
On behalf of the World Federation of Hemophilia (WFH) and the Haemophilia Foundation Australia (HFA), we kindly invite you to participate in the WFH 2014 World Congress in Melbourne, Australia, May 11-15, 2014. The HFA is honoured to host the largest international meeting dedicated to hemophilia, von Willebrand disease, rare factor deficiencies, and inherited platelet disorders. We expect over 4,000 attendees from more than 120 countries.
ROCK Camp 2013 Noordhoek
We held a very successful ROCK camp in Noordhoek over the past weekend.
Covering sessions on:
- Substance abuse
- Peer pressure
- Leadership skills
- and the way forward for the guys, the community and the SAHF.
We were very impressed with the development and growth of these young gentlemen and are looking forward to the next camp.
Special thanks to all those who made it possible!
Physio Training course has been postponed
Unfortunately, the Physio Training course has been postponed until early 2014 due to poor response.
PEP (Parents Empowering Parents) workshop
A very successful PEP (Parents Empowering Parents) weekend workshop was held in Cape Town on 17-18 August. There were 26 participants including 2 from East London. Those participating will share the knowledge gained with families in their own communities. The workshop was made possible by funding from Steenberg Golf Club Charity week.
In memory of Vicky Mafoko
Traditional circumcision has claimed a life of one of our known Haemophilia patients in Limpopo in June 2013. Please find the attached letter which was written by the uncle of the deceased on behalf of the family as well as a person living with Haemophilia. This tragedy strongly expresses the need for the education and advocacy of Bleeding Disorders.
Reach for a Dream
The purpose of the Reach For A Dream Foundation is to fulfil dreams for children of all income groups and of any race, colour or creed between the ages of 6 and 18 who have been diagnosed by a doctor as having a life-threatening illness such as cancer, leukaemia, cystic fibrosis, muscular dystrophy, kidney failure and blood disorders.
Reach For A Dream believes that no child should live without hope. Childhood must be the most magical Phase of the human existence, filled with dreams, aspirations and most of all . . . fun!
We seek to alleviate the strain that a life-threatening illness takes on these children and their families by providing the children with the opportunity to realise their dream. Reach For A Dream enriches children's lives by making dreams come true and as a result distracting them from the needles, medication and hospital environment. These young children are under extreme pressure to deal with these medical issues and are in desperate of our encouragement. Reach For A Dream offers these children a magical moment to regain their childhood that is being lost to an illness.
Please let us know if you are aware of a child with a life-threatening illness because we would like to make a difference in that child's life too!Download the Request Form here
Ryk Neethling & Novo Nordisk helps raise Haemophilia awareness
South African swimming icon
spent time in the pool at
Val de Vie
in Paarl, coaching children suffering from the bleeding disorder haemophilia, to raise awareness on
World Haemophilia Day.
"It was the first time in a pool for some of these boys, and it was amazing to see how quickly they gained confidence," said Neethling. "At first they'd hang on to me for dear life, but as they saw that they were safe and that they could float, and swim, such big smiles would spread over their faces! It was really moving."
The event was coordinated by the SA Haemophilia Foundation and the pharmaceutical company Novo Nordisk, who approached Neethling to get involved. "Swimming is one of the best activities for people with haemophilia," explains Bradley Rayner, chairperson of the SA Haemophilia Foundation and someone who lives with the disorder himself. "The weightlessness in water means there is no risk of injury. And if you're going to show youngsters what swimming is all about, who better than the guy who won the gold? " Rayner says it was heart-warming to watch Neethling in the pool with the kids. "These children come from difficult circumstances, so it makes it all worthwhile when you see them honestly enjoy themselves for a change. Having someone coach them so gently and with such empathy made all the difference."
Haemophilia affects the clotting ability of blood, which can cause severe bleeding at the slightest injury. It is generally found in boys, though one in 1 000 people have some form of bleeding condition, and it can impair quality of living immensely when socioeconomic reasons prevent proper medical care.
"Thank you Ryk Neethling for allowing us to spend the day with you," wrote one mom in a thank-you note after the event. "It gave me great joy today to see my son so happy, it was like a piece of heaven even if just for a little while." And that is why he turned down that multimillion rand offer to go and swim in Qatar, Neethling explains. "I want to be here, where you can make a difference simply by giving of your time, and love. You don't have to be wealthy to make a difference in South Africa."
For more information on The South African Haemophilia Foundation or to find out how you can get involved in volunteering, call (021) 7857140 or email us here.See more photos from the day here
South African Haemophillia Facebook Support Group
Please join and share your news, ideas and experiences regarding Haemophilia and other bleeding disorders.Join here
Haemophilia Pamphlet - IMPORTANT INFORMATION
Please download this important pamphlet in the your preferred language:siSwati Sotho Sepedi Ndebele English Afrikaans
isiZulu Xhosa TshiVenda seTswana Tsonga
The council of Medical Schemes (CMS) would discipline medical schemes that did not pay prescribed minimum benefits (PMBs) "in full" after the regulator won a court battle with the Board of Healthcare Funders of Southern Africa (BHF) over such payment ...Read the full story in the the latest Central newsletter