Central Newsletter 2nd Quarter 2016
Download the Central Newsletter 2nd Quarter 2016 here
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.
Download the Central Newsletter 2nd Quarter 2016 here
BERARIO RECREATION CENTRE Dolores Ave, cnrKing Str, Berario
For more information, contact event co-ordinator: Erica 083 453 2200, or firstname.lastname@example.orgDownload the flyer here
Read Sr Anne Gillham's farewell letter here
Let us look back on OUR achievements as a COMMUNITY over the last year.
A heartfelt THANK YOU from all of us :)Download the National Newsletter here
The South African Haemophilia Foundation has noted with concern the proposal by the Minister of Health to amend the Medical Schemes act. He has published an amendment that seeks to change the current position concerning prescribed minimum benefits (PMBs), which is that medical schemes, regardless of the plan a member is on, must pay in full for the diagnosis, treatment and care of PMB conditions. In other words, the member cannot be required to make a co-payment for the costs associated with any PMB condition. The underlying rationale is to provide continuous care and ensure that members –especially those suffering from serious illnesses - do not run out of benefits for the specified medical conditions. This is meant to ensure that everyone has a right to health care services, including members of medical aid schemes.
We have embarked on a process to engage with other patient organisations in order to better understand the proposed changes to the legislation and potentially to join them in legal or other battles against the new legislation.
We will keep you informed of any developments but in the interim please rest assured that we have taken up the interests of our community and will fight to protect the rights of all to treatment.
Report by Erica Bradley
World Haemophilia Day was back and Dance 4 PWH was back! This year we had a two day competition at the lovely Berario Recreation Centre in Northcliff over the 25th and 26th April 2015. The weather played along nicely as we had bright sunshine, and our kind volunteers from all walks of life had their bright red SAHF aprons on to welcome all the dancers, spectators and officials.
For our 5th year of hosting this event, it was still wonderfully supported by all the dance studios and the hall was busy and full of dancing action from young and old, to beginner and professional. We had many people and companies sponsoring various different things, and we are very grateful for all of their support, as we continue to create awareness for bleeding disorders in our communities. The officials all donated their time and expertise to the event and because of this, we managed to raise R46 707-35 for the SA Haemophilia Foundation.
This year also saw us with two haemophilia sufferers as well as a haemophilia nursing sister taking part in the dance competition – we would like to congratulate them on this achievement, and hope that they will inspire many other boys and girls out there with bleeding disorders to follow their dreams and take part in sport or arts of their choice.
There were exciting demonstrations on both days and the dancing went on from 9am to 4pm on both days. If you missed out this year – be sure to come and watch in 2016!Download the poster here
Scenes from around the country ...
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.Read the article here
Eugene's next cycle adventure is from Windhoek in Namibia to Cape Town, South Africa.
On this adventure he will be driving an awareness campaign for the South African Haemophilia Foundation to promote greater awareness about haemophilia.
My son Ezra was diagnosed with severe Haemophilia A just a few days after birth, when he was circumcised and the wound bled for several days. I was a first time mom, and dealing with the normal challenges plus the unknown implications of a special needs baby, I was in severe shock for quite a while.Read the article here
This workshop was attended by 46 social workers from the Eastern Cape.
It was considered to be very successful and the feedback has been excellent
– "an informative and interesting workshop" – an eye-opener for some who knew nothing about haemophilia.
With guest speaker Dr Alison Dougall from Trinity College, Dublin.
Please join our Facebook Support Group and share your news, ideas and experiences regarding Haemophilia and other bleeding disorders.Join here
We held our first ever Over-21 Meetup in Cape Town on Saturday, 8th March.
The following sessions were covered:
We are planning on holding these once a quarter, with the next one in June.
Exciting new topics will be discussed and it's a great opportunity to get involved in our growing community.
If you would like more information or to attend, please contact us at: email@example.com
We held a very successful ROCK camp in Noordhoek over the past weekend.
Covering sessions on:
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!
Unfortunately, the Physio Training course has been postponed until early 2014 due to poor response.
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.
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.
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
South African swimming icon
spent time in the pool at
in Paarl, coaching children suffering from the bleeding disorder haemophilia, to raise awareness on
"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
Please download this important pamphlet in the your preferred language:siSwati Sotho Sepedi Ndebele English Afrikaans
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