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World Hemophilia Day 2015

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.

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.

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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.

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.

Haemophilia nurses training will take place at GSH HRD from the 13th- 17th October 2014.

There is no cost for the training and all training materials will be provided including Lunch and Teas

Please can you send out the info to all the interested Hospitals who would like to participate.

Western Cape still has areas who do not have expertise and would benefit from the training.

These would include: Stellenbosch, Helderberg, Macassar, Worcester, Laingsburg, Robertson, Khayelitsha, Kleinmond, Albertinia, Mosselbay, Piketburg, Moreesburg / Malmsbury, Hermon, Tafelsig, Maitland Cottage and the Academic hospitals including trauma maternity paediatrics and male medical wards.

Course will start daily at 8 am and end at 15h30 daily and 13h30 on Friday.

Click here to fill out the Registration form for the Haemophilia nurse training WC 13-17 October 2014 online

Downloads:

• Background to Haemophilia Nurses Course 2014 CT
• Program HNT 2014
• Registration form Haemophilia nurse training WC 13-17 October 2014 (PDF VERSION)

Scenes from around the country ...

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.

Let us look back on OUR achievements as a COMMUNITY over the last year.

A heartfelt THANK YOU from all of us :)

We held our first ever Over-21 Meetup in Cape Town on Saturday, 8th March.

The following sessions were covered:

• Overview of the SAHF and WFH
• General health issues related to 'Aging with haemophilia'
• Psychosocial aspects of haemophilia comprehensive care
• Networking and advocacy
• General discussion and the way forward

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: haemophilia.org.za@gmail.com

We held a very successful ROCK camp in Noordhoek over the past weekend.

Covering sessions on:

• Self-empowerment
• Compliance
• Physiotherapy
• Networking
• 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!

View the Photo Gallery here

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.

Please click here to view the letter

Download the business card here

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Download the UJ Dance Challenge 4 PWH Report

Download the letter here

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!

South African swimming icon

Ryk Neethling

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.

Haemophilia Pamphlet - IMPORTANT INFORMATION

Please download this important pamphlet in the your preferred language:

Medical aids warned to pay in full

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 ...