Contact People

PretoriaMarchaine Wright 082 418 8417

Julie Malan 082 553 5891

LimpopoCulphus Rikhoto 073 415 5668

David Mogamisi 073 480 6385

Western CapeJudy ButlerOperations Manager

021 785 7140 083 711 7287 butlersr@iafrica.com

Central RegionJohn BradleyRegional Chairman

011 463 2393 083 298 0970 johnb@calibrecse.co.za

KwaZulu-NatalWayne Fowles

082 321 0931 wayne@fotomax.co.za

Western CapeBradley RaynerNational Chairman

082 882 6420 bradley.rayner@za.didata.com

Regional Contacts

JohannesburgSr Alice Banze

082 896 3833 alice@haemophilia.org.za

Cape TownSr Anne-Louise Cruickshank

082 788 1038 anne-louise.cruickshank@uct.ac.za

Nurse Counsellors

Eastern CapeRichard Johnson 041 583 3159

Dennis Kibiru 079 555 7271

P.O. Box 172Plumstead

7801021 785 7140

butlersr@iafrica.com

“I have walked that long road to freedom. I have tried not to falter; I have made missteps along the way. But I have discovered the secret that after climbing a great hill, one only finds that there are many more hills to climb. I have taken a moment here to rest, to steal a view of the glorious vista that surrounds me, to look back on the distance I have come. But I can only rest for a moment, for

with freedom come responsibilities, and I dare not linger, for my long walk is not ended.”

- Nelson Mandela

Free StatePhillip Shapu 078 331 0744

www.haemophilia.org.za Edition 6 | February 2014

South African Haemophilia Foundation

National Newsletter

Around South Africa ...

In this issue:

· PEP Workshops

· ROCK Camps

· Contact Information

· Farewell: Sr Reinett Olivier

· Nurses Training 2013

· Psychosocial Workshop

· Farewell: Sr Phumi Nkosi

· NEWSFLASH: Award

· MASAC Meeting 2013

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Farewell to Sr Phumi Nkosi by Wayne Fowles South African Haemophilia Foundation | KwaZulu-Natal

On the 27th June, we said our farewell to the KZN Haemophilia Nurse Coordinator, Sr Phumi Nkosi. During her many years of service she has been a mother, a counsellor and a caregiver to the haemophilia community in KZN. We will miss her greatly and wish her the best in her future plans.

KZN will be without a Haemophilia Nurse Coordinator for a short time while we find someone to replace Sr Phumi’s amazing care and touch. It’s not going to be easy. We do have 2 new Sisters starting in the KZN Clinic, Sr Sosibo and Sr Mhlongo. We welcome them with open arms into our family and look forward to training them up and growing the care to Haemophilia patients.

Sr Phume, as she was affectionately called arrived at our Haemophilia nurse training course held in Durban in 2006. She had been recommended as a candidate for the course by the Haematology clinic where she worked and the hospital authorities. We soon discovered why. Sr Phumi had a keen interest in the patients she treated and a keen interest in learning. This was confirmed by her pass mark of over 90% and the class voting her “the person most likely to contribute the most to People with Haemophilia”. How prophetic that was! Her leadership abilities were already visible in one short week of training!

Professionally working alongside Sr Phumi, we saw an individual who never stopped giving to her patients, ensuring correct management in a nurse-led clinic where great responsibility was placed on her shoulders for day-to-day care and education. She took the objectives of the haemophilia nurses, to “ensure haemophilia care was rolled out on the ground” very seriously and was instrumental in getting the outreach program to Ngwelezane and Greys hospital functioning.

Home visits and home therapy training were given regularly and great effort was made to

highlight the haemophilia program on World Haemophilia Day via many in-service training days and programmes over all the years. Sr Phumi even wrote a play about haemophilia that was presented in Greytown by young men with Haemophilia as part of her awareness campaign.

Sr Phumi worked closely with the Haemophilia Foundation running camps, conducting school visits and was instrumental in forming a womans support group. She selflessly gave many hours voluntarily to her patients. She also had insight and tasked herself to build a relationship with the traditional healers, as the patients and families from the rural areas strongly believe in them.

As a member of the SAHF nurses committee she was voted in as chairman of the committee and served in this post for 4 years. Sr Phumi travelled to many Haemophilia meetings overseas bringing back new found knowledge and ideas and always implemented them into her clinic. She evaluated the Zulu translation of the Haemophilia in pictures and translated the Physiotherapy guidelines into Zulu. It was a pleasure to work with her!

From the Nurses committee and nursing colleagues Medical and Scientific Advisory Council (MASAC) MeetingJohannesburg: 7-8 November 2013

Guest speakers at the meetings were (from the left): Drs Steve Kitchen from UK and Adolfo Llinas from Bogota, seen here with WFH patron Jan-Willem de la Porte and Dr Assad Haffar, Regional Program Manager for Africa and the Middle East for WFH.

NEWSFLASH - WFH Haemophilia Organization Twins of the Year 2013

The South African Haemophilia Foundation and the Haemophilia Association of Mauritius (HAM) have been named the WFH Haemophilia Organization Twins of the Year 2013.

The award will be presented at the WFH World Congress in Melbourne in May.

Congratulations to all involved.

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PEP (Parents Empowering Parents) Workshops

A very successful PEP 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

Sr Thabi Mnguni and Julie Malan ran the first of a series of PEP courses at Steve Biko Hospital in Pretoria.

Psychosocial Workshop

A productive psychosocial workshop was held in East London on 13 June organized by Mrs Leonora Bolt.

The guest speaker, Tony Roberts, is an educational psychologist and himself a PWH.

More than 70 social workers representing 34 hospitals attended. The feedback was excellent and many felt that they could use skills learned in this workshop to assess and assist patients with other diseases.

Nurses Training 2013

Nurses training took place in the following areas:

January Mthatha: as part of the Novo Nordisk Haemophilia Foundation (NNHF) projectApril Cradock: also part of the NNHF projectJune MahikengJune Kenya: Sr Cruickshank was invited by WFH to participateAugust Pretoria (Ga-Rankuwa): at Dr George Mukhari HospitalAugust Pretoria: at Steve Biko Academic HospitalAugust Mauritius: as part of the SAHF twinning programmeSeptember Western Cape: with 6 nurses from KZNSeptember Nelspruit: at Rob Ferreira Hospital

Farewell to Sr Reinett Olivier by Judy Butler South African Haemophilia Foundation | Western Cape

Sr Reinett Olivier has been part of the haemophilia family for more than 40 years, starting as the sister in Professor Karabus’ haemophilia clinic at Red Cross Hospital and completing the circle by agreeing to be a part-time nurse counsellor for the SAHF in Western Cape after her retirement from the oncology unit at the then Wynberg Private Hospital in 1999.

Reinett has been involved in all aspects of the Foundation, not just nursing but fund-raising, awareness, teaching, camps and of course looking after her haemophilia patients, some of whom were babies in Prof Karabus’ clinic and have now risen to leadership roles in SAHF. We thank her for her caring and dedicated service for all these years. She has been a friend to us all and a mother figure to many of her patients. Enjoy your well deserved retirement at last Reinett!

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Camps for Persons with Bleeding Disorders (PwBD)Reflections by Tony Roberts PwBD, SAHF volunteer, WFH Psychosocial Committee member

Eastern Cape14 – 16 June 2013

The 2013 Eastern Cape Camp for PwBD was held at the Willows Holiday Resort in Port Elizabeth. 30 young men, all living with either Haemophilia A or B attended the camp. They were between the ages 13 to 30. Similar to the 2012 Eastern Cape camp, these young men spent the weekend in the midst of a beautiful coastal setting, good food and lots of friends.

The programme was jam-packed with activities such as medical information about haemophilia, the psychological effects of haemophilia, coping skills, HIV and AIDS, issues surrounding circumcision and

Western Cape4 – 6 October 2013

The Western Cape branch of the South African Haemophilia Foundation (SAHF) hosted a weekend camp for Persons with Bleeding Disorders (PwBD) from 4 to 6 October, 2013. Sixteen young men, all with Factor 8 or 9 deficiencies, enjoyed a weekend of fun, pampering, lots of good food, and a programme filled with experiential learning.

The beautiful part of the Cape, called Noordhoek, again proved to be the ideal spot for a weekend away from family, school-work and the general pressures of life. Its scenic beauty is augmented by its close proximity to the sea. A brisk walk to the beach formed part of a programme that incorporated sessions on self-empowerment, compliance to medical treatment, the importance of physical exercise, networking skills, negative effects of substance use, and leadership skills. Sufficient time was allocated for inside and outside games.

A huge thanks to the very competent volunteer team: Sr Reinett Olivier, Freble Reid and Shamiera Barends, who made sure that we were sufficiently fed; Sr Anne-Louise Cruickshank, haemophilia nurse; Sameer Rahim, physiotherapist; Reeshen Pillay, IT specialist; Judy Butler, Programmes Organiser for the SAHF; Bradley Rayner, chairperson of the SAHF; and Sheryl Rayner, supporter of SAHF work.

We also invited two very special facilitators to assist us. Special thanks must go to Zein Messina and Maahierah Satardien who assisted us with sessions on leadership skills and substance abuse.

haemophilia, as well as the effects of substance abuse on haemophilia.

The absence of a physiotherapist meant that the nurses who again gave such excellent medical support also did a splendid job showing us how to use the thera-bands for a full physical work-out.

The highlight of the weekend came from the young men, themselves, when they displayed their creative skills through song, dance, rap and guitar playing. This was ample proof that they had grasped the main objectives of the camp. We wish each of them a bright future and hope that they can persevere through all the challenges that they will

encounter in the future.

Thanks to everyone involved in organizing this camp. The nurses who are always available, the two social workers who took time out of their busy schedules to visit the camp, the drivers who drove us all safely, and the Willows Resort staff who catered so well.

Special thanks to Sr Alice De Klerk and Mr Henry Steenkamp for their excellent organizing skills.

Well done Eastern Cape, you can be proud of yourselves.

This Eastern Cape Haemophilia Camp

was sponsored by the Novo Nordisk Haemophilia Foundation

This Western Cape Haemophilia Camp

was sponsored by the Western Province Blood Transfusion

Service

Participants’ evaluation of the camp revealed their appreciation for the opportunity to make new friends, to share different views, and to work with others in groups. Participants also expressed that they planned to use the knowledge and information in their lives. They also expressed an appreciation to the volunteer team for making this an enjoyable camp.

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