n Province

..History Since
..Inauguration
..on 16 July, 1970

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1) INAUGURATION

The inauguration of the former Northern Transvaal Region took place at a meeting held in the offices of the Department of Information, Ad Astra Building, Church Street, Pretoria on 16 July 1970. It was initiated by Mr. and Mrs. Wynand van Eyssen after the inauguration meeting of the S A Haemophilia Foundation held in East London on 30 May 1970. 19 persons attended this meeting. Mr. van Eyssen acted as temporary chairman. Prof. Isak de Wet, Head of the Orthopaedic Department of the University of Pretoria was also present as he was interested in the treatment of haemophiliacs. Prof. de Wet became the official medical advisor in Pretoria and with his help the treatment improved, but was still not up to standard. Dr. Aubrey Lurie, National Secretary of the S A Haemophilia Foundation represented the National Committee at this meeting.

2) COMMITTEES SINCE 1970

The first committee members elected were Gerhard Coetzee, Chairman, Mrs. J du Toit, Vice-Chairperson, Mrs. Sannie van Eyssen, Secretary/Treasurer. Mrs. Greta Marshall and Mr. Wynand van Eyssen were elected as additional members.

Since the inauguration the following chairpersons have been elected:

Gerhard Coetzee
Danny Boshoff
Albert de Villiers
Peter Curtayne
Peter Stow
Jaco Coetzee
Valerie Coetzee

It is interesting to note that the following office bearers from this Region were at some time or other elected to the National Council:

Gerhard Coetzee - National Chairman
Peter Curtayne - National Vice-Chairman
Albert de Villiers (formerly from Northern Transvaal Region) - National Secretary

Recently at the Biennial General Meeting of the S A Haemophilia Foundation held on 26 July 1997 Gordon Marran, Vice-Chairman of the North Region, was elected National Secretary.

3) MEETINGS

3.1 Attendance and frequencies

Meetings were held on a regular basis. Initially committee meetings were held once a month. General meetings were held quarterly in the Lecture Room at the Clinical Building of the H F Verwoerd Hospital. These meetings were well attended and interesting topics were discussed.

The first Annual General Meeting was held on 10 August 1971. The guest speakers on that occasion were Drs. Lurie, Jenkins and Prof. J L Weyers.

The topics were Sex-linked Inheritance in Man, Management of Haemophiliacs, Adjustment Problems of the Physical Disabled. They were well received and much discussed. A guest speaker was invited to every General Meeting from then on.

3.2 National Congress of the S A Haemophilia Foundation

The Fifth National Congress of the S A Haemophilia Foundation was held in the Union Hotel, Pretoria on 24 September 1977. Dr. Kalie de Haas, MEC Hospital Services, Transvaal Provincial Council, made the opening speech.

4) AIMS/GOALS

The aims of the Region were the same as that of the National body. Our main endeavour in those early days was to get the correct and immediate treatment for haemophiliacs.

With due respect to the medical profession, hardly any local doctor had any knowledge of haemophilia, never mind the treatment of it.

On the other hand we had to educate and inform members about developments in the treatment of haemophilia. It was no easy task and even today we still have problems with parents and patients, as far as their understanding of correct treatment is concerned.

5) TREATMENT FACILITIES AND DIFFICULTIES

Prof. De Wet requested Dr. Lurie to help establishing a clinic/treatment centre at the H F Verwoerd Hospital in Pretoria. Prof. De Wet, at that stage felt he could get doctors from all disciplines interested in the treatment of haemophilia.

Prof. De Wet started a clinic at the Orthopaedic Hospital. They saw patients on a regular basis but it did not last. Patients lost interest and attendance was unsatisfactory.

Prof. Frans Cronje, Paediatrician and Prof. Fief Pretorius, Haematologist also tried to get a clinic going but eventually it was decided to discontinue the clinic due to lack of interest. Patients attended the Clinic in Johannesburg where more specialized treatment was available.

The Casualty Department in Pretoria was still being used for emergency treatment. Treatment facilities varied, depending on the medical staff in attendance at the Casualty Department. Many patients were still sent home without treatment. Prof. Coen van der Merwe took over and reorganised the Casualty Department (renamed the Trauma Unit) and treatment of patients improved considerably. Patients often had to wait up to five hours or more to get treatment. Nevertheless, slowly the products improved and treatment procedures changed. Prof. van der Merwe also arranged that haemophiliacs be treated as soon as possible after their arrival at the Hospital, and eventually patients were allowed to set-up their own drips.

Home infusion was introduced during 1980 and patients were also allowed to take home cryo-precipitate on a limited scale. Products have improved considerably and since the introduction of Human Factor VIII (concentrate) and Factor IX the treatment has changed dramatically with the emphasis now on home treatment.

Many efforts were made in the past to get a clinic off the ground in Pretoria, but all attempts failed. After all the battles, tears and hardships a clinic was formally started at the Pretoria Academic Hospital on 2 April 1997. Sister Anne Gillham was the driving force behind this and she made every effort to motivate and train the staff.

Patients can now attend the Clinic at the Pretoria Academic Hospital which is run under the supervision of Dr. N O Beck, haematologist and Dr. J C Opperman, paediatrician. The Clinic is held on the first Wednesday of every month. Patients from the Northern Province, Mpumalanga, North West and Gauteng are all being treated at Pretoria. The well-established clinic is running smoothly now. Patients will now have to be motivated to attend the clinic on a regular basis.

Unfortunately recently it was discovered that the product became so expensive that the Pretoria Academic Hospital could no longer afford to supply patients from other Provinces. Presently patients are still being treated on an emergency basis. Visiting patients from other Provinces have to arrange with their local hospitals to get the day-to-day products.

6) FINANCE AND FUNDRAISING

As with many welfare organisations, finance has been a problem right from the start. The committee managed to maintain a satisfactory financial status initially by organising annual Bowling Competitions at the Premier Mine Bowling Club. Mrs. Greta Marshall held jumble sales whenever goods were available. In this way a substantial amount was raised. Very little money was raised from membership fees, sponsorships and donations. We did however, raise enough money to pay our annual levy to the National Council. The initial membership fee was R1.00 per member. Presently it amounts R25.00 per member or R40.00 per family per annum. We still have a problem raising funds but find that some members are prepared to pay the R25.00 and even make a donation as well. However, many of our members cannot pay anything.

7) ACHIEVEMENTS

Derek Marshall was the first member of this Region to receive a bursary from the Southern Transvaal (now Central Region) to further his studies in Electronics (Light Current). He obtained his National Diploma for Technicians during 1978. At present he holds a very good position as Customer Support Engineer for ICL.

Peter Curtayne (who passed away in 1993) was one of our brilliant members. He obtained his doctorate with a dissertation on Maintenance Control System for Rural Roads. He also received the Transportek Director’s Award for Excellence.

Jaco Coetzee received the Small Business Development Corporation’s award for the best student in Entrepreneurship in 1994 while studying for his MBA degree.

Freddie Leddra, a physical disabled patient, became a Springbok during 1995.

He played in the World Bowling Championships in Mandeville, London. Unfortunately he did not win, but the achievement was none the less fantastic.

Dérik van Eyk (9 years old) obtained his Northern Province colours for Chess in 1997. He is taking part in the S A Championships in Pretoria during December 1997 in the under 12 age group.

8) DISSERTATION AND DOCTORATE THESIS :
8. H J TRYTSMAN AND S A GROBLER

Although Dr. S A Grobler and Mr. J H Trytsman were not involved in any way with the Foundation both did studies in this field. Dr. Grobler’s interest stems from the fact that she is related to a very strong family of haemophiliacs. She is related to Mrs. Sannie van Eyssen (now deceased) and Valerie Coetzee.

Mr. J H Trytsman of Pretoria did his dissertation A Psycho-diagnosticStudy of a Group of Haemophiliacs for his MA-degree. The Northern Transvaal Region supported him as far as possible. He was also given a grant on the condition that he discuss his findings at a General Meeting of this Region, on completion thereof.

Mr. Trytsman travelled 8 000 km to reach as many haemophiliacs as possible to complete his dissertation. He tested 24 persons between the ages 17 and 23. It was not an easy task to trace and reach interested and suitable patients.

Dr. S A Grobler also from Pretoria, did her thesis for her doctorate on ThePersonality, Self-conception and Vocational Interest of a Group of AdolescentHaemophiliacs. She interviewed 40 haemophiliacs, 14 Afrikaans speaking and 26 English-speaking persons. Her test group was between the ages 16 to 22 years. She in turn also had to travel extensively to reach the patients that were needed for her test group.

She was also granted a bursary by the South African Haemophilia Foundation for the purpose of her studies.

After completion of her doctorate, Dr. Grobler delivered a paper at the 7th National Congress of the S A Haemophilia Foundation, held in Bloemfontein on 14 July 1981.

She also delivered papers at three Congresses overseas. One was in Bonn during October 1980, another in Stockholm, Sweden in June 1983 on Haemophilia and the Sick Role. From 19 to 25 August 1989 she attended a Congress held in Japan and read a paper on Current Psychological Problems in the Treatment of Haemophilia.

She is always prepared to deliver speeches in connection with her thesis. .

9) ACTIVITIES

During the early 90`s activities of the North Region were grinding to a standstill, resulting in a proposal to the National Council that the Region be dissolved. It seemed as if nobody was interested in continuing with the regional activities.

9.1 Revitalisation of the North Region
9.1 (former Northern Transvaal Region)

The National Council did not favour the dissolution of the Region and they asked the then Southern Transvaal Regional Committee to help Northern Transvaal to re-establish itself.

At a special Regional meeting held on 22 April 1995 a unanimous vote was taken to retain a presence in the Region. A new Regional Committee under the chairmanship of Jaco Coetzee was elected. The name of the Region was changed to the North Region to comply with the establishment of the nine Provinces under the newly elected Government. In view of the large area constituting the North Region, it was decided to elect contact members at Nelspruit and Tzaneen. Andy Cresswell and Billy Brown were respectively elected to represent Mpumalanga and the Northern Province.

10) MEMBERS

In 1979 the Chairman reported that there were 13 white and two Indian haemophiliacs registered in the Northern Transvaal. Now there are 203 patients on our Hospital List. Many of whom no more details than a name and hospital where they are or were being treated, are available. The deficiency often is also not available. This information was received from various hospitals in this Region.

On our member list we have 275 persons registered. This includes parents and family members, but a total of 69 newsletters are sent as only 69 addresses are available. Although letters are sent to these patients and other members, there is hardly any reaction. A few people respond to requests and suggestions. We will, however, persist!

10.1 Membership List

Gerhard Coetzee compiled a comprehensive membership list. This was a huge task. We still need more information but at least this is a beginning. We have details that were not available before and more details are becoming available on a regular basis.

10.2 Buddy System

The Committee started a Buddy System. Committee members were each allocated a list of members to contact regularly. Through this system we built up a good relationship with the members we are able to contact. Many patients were persuaded to attend the Pretoria Clinic. On a personal basis patients appreciate the contact made and the interest shown by the Foundation.

11) THE PRESENT SITUATION

Although the problem of fundraising still exists and many haemophiliacs living in the boundaries of the North Region still attend the Johannesburg Clinic for treatment, the situation in this Region could be termed satisfactory.

The committee is well supported by the members who are interested in the Foundation and have made good progress as far as it concerns the treatment of patients.

12) THE FUTURE

We see a bright future ahead of us and think if we succeed in motivating our members to regularly attend the Clinic to be assessed and to treat injuries and bleeds immediately, haemophiliacs can live a normal and unhampered life.

We will concentrate on improving the quality of life of and to provide fellowship for haemophiliacs.

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