Creation and history

A brief History of Haemophilia Society of Guipuzcoa

1970. A good few years ago, Guipúzcoa began to move within the world of Haemophilia. At that time, Haemophilia was little or not at all known by the medical world, let alone by the layman. It was also a time when the first medical treatments to alleviate the effects of the condition were being discussed. It was a time when the chance of leading a fairly normal life was first suggested to haemophiliacs. There would be greater help in schools, as well as the chance to practice some kind of sport, greater and better social interaction and there would even be the chance for integration in a work situation.

The first medical treatment was basically a transfusion every time the haemophiliac had some physical problem. And it was administered at the hospital itself. Of course, we are not speaking about such efficient, safe and convenient treatment as we have nowadays.

In Guipuzcoa, the need to do more for those affected by Haemophilia and Von Willebrand´s Disease was soon seen to be urgent, this was to be something over and above mere medical attention. Due to this, the first Assembly of the Guipuzcoa Haemophilia Delegation was held. This was when the first committee was formed in Guipuzcoa: President - Mr Luis Abad. Vice president - Mr Paco Arregui Secretary - Mr Luis Gorriti Spokesmen - Mr Gabriel Velamazan and Mr Javier Carrera. Along with these are people who have also played a very important role and thanks to all of them we have been able make our history.

Since the Guipuzcoa Haemophilia Delegation was established, there have been three presidents, who have, with their hard work and dedication, encouraged those affected by haemophilia: Mr Francisco Arregui was the founder and promoter of the whole associative process in Guipuzcoa, Mr Manuel Irazusta continued this work over a period of three or four years and Mr Javier Carrera, who, since 1981 has represented the organisation till the present time.

1971. Right from the very beginning, we have belonged to the Spanish Federation of Haemophilia, as well as the World Federation of Haemophilia. And for this reason we have shared the work in a national framework, taking full part in all the meetings that have taken place over the years of the National Board of Directors.

1987. The Guipuzcoa Haemophilia Delegation took it upon itself to organise the XIII General Assembly of the Spanish Federation of Haemophilia which was held in San Sebastian. 1987 Also in 1987, the three provinces of the Basque Autonomous Community created the Basque Haemophilia Association with the intention of potenciating the integral aid given to the Haemophilia/Von Willebrand collective. 1995

The Guipuzcoa Haemophilia Delegation lived one of its most significant moments. This was when the General Assembly took a unanimous decision to become the Guipuzcoa Haemophilia Association with the idea of creating a ”Psycopedagogical Service” in answer to the needs put forward by its members.

Throughout all these years many people have been on the Board of Directors, some affected and others not affected by Haemophilia/Von Willebrand. All of them gave their very best, showing great interest, willingness and above all, giving many hours of work so that Haemophiliacs could be fully incorporated in society and at work. They carried out a job of constantly informing about Haemophilia, the problems which those affected by the illness have to face and in a very special way they began to involve the doctors in the needs of Haemophiliacs in society and at work.

We have always been able to count on the support and collaboration of the team of Haematologists in the Blood Bank, as well as experts in rehabilitation etc. who attend us in Nuestra Señora de Aranzazu Hospital in San Sebastian (Now known as the Donostia Hospital) We must also mention the willingness and kindness shown by those responsible in the Unified Laboratory without whose help we would not have been able to continue our task. Many names must be mentioned here: Dr. E. Rocha, Dr. A. Mendibil, Dra. M. Uranga, Dra. C. Urkizu, Dra. C. Arratibel, Dr. A. Aguirre, Dra. M. Urbieta, Dr. Estevez, Dr. J. Aguirre, Dr. J.M. Mujica, Dr. Furundarena, Dra. M. Lecuona, Dña. Cristina Martinez, Dña Carmen Grijalba, among others.

Whenever we can , we can but express our appreciation to all those , mentioned here or not, who have helped, supported, encouraged and have shown interest in our project, help which has been of the utmost importance.

Based on the objectives of the Association, various activities are taking place:

Help in education for those needing to recuperate missed classes or exams,
Economic aid for those who may need it, informing of the need to carry out periods of rehabilitation, and the need to have regular dental check ups.
Informative talks on Haemophila are also given to the emergency services such as the Red Cross, DYA as well as private enterprises to advise on the care to be taken in the case of accident.

We also thought it was a good idea to send those children who wished to go, to summer camps, organised by the Spanish Haemophilia Federation.

One of the most recent significant events to take place in our Association has been the request by the Spanish Haemophilia Federation for us to inform on our work and experience as an Association and as a Psychopedagogical Service at the XXV International Congress of Haemophilia of the World Haemophilia Federation in May, 2002. This fact perhaps reflects the work realised since the Service was created. We believe that at this time it is important to try to be objective and maintain the proposed project as long as is necessary. The team of workers in the Guipuzcoa Haemophilia Association feel obliged to continue in the struggle to improve daily the quality of life of all those who mat be related with the illness.

What is more, we are convinced that we should respect the effort carried out by all those who have gone before us. We hope that this brief reminder of the activity of the last few years will help the reader to see how serious the intentions and feelings are of those who do whatever they can to so that the people affected by this illness do not feel alone or ignored.