WHAT IS HEMOPHILIA?

There are numerous inherited bleeding disorders. The most common ones are the hemophilias and von Willebrand Disease. Hemophilia is an inherited bleeding disorder caused by a deficiency or defect of one of the proteins necessary for blood to properly clot. These proteins are known as clotting factors. The type and severity of a person's hemophilia depends on which protein is involved and to what degree they are deficient. The most common forms are hemophilia A (classic hemophilia) which is a deficiency of Factor VIII and hemophilia B (Christmas Disease) which is a deficiency of Factor IX. Hemophiliacs do not bleed faster than others: they bleed longer because their blood does not clot properly. Symptoms include bleeding into joints and muscles which over a period of time can lead to chronic pain, arthritis, deformity and disability. In addition, bleeding occasionally occurs in the brain and other vital organs which can be life threatening. Hemophilia affects mostly males and occurs in 1 in every 50000 male births. The severity of a person's hemophilia is based upon their baseline factor level. People with severe hemophilia have a level below 1%, moderate hemophilia is 1-5%, and mild hemophilia is 6-30%. The normal level for factor VIII or IX is above 50%. Female carriers of the hemophilia gene may also exhibit abnormal bleeding. This occurs when their own factor VIII or IX level is below normal.

Treatment is aimed at replacing the deficient clotting factor. This is done via infusions of concentrates containing the needed factor. Many patients are on a home infusion program whereby they self-infuse the clotting factor concentrate when they bleed or administer it regularly to prevent bleeding. This ensures prompt treatment, and gives them greater independence and more control over managing their disorder. The costs of treating severe hemophilia are high. Prevention, early recognition, and prompt treatment of bleeds can help keep these costs down as well as reduce disability.

WHAT IS AHETE?

The Association of Hemophilia in the province of Santa Cruz of Tenerife, AHETE, Is a not-for-profit organization, without government´s welfare, that was constituted in 1992 and composed by people affected by Hemophilia or other inherited bleeding disorders, carriers of the disease, their families and our collaborators.

ASSOCIATION´S MAIN SERVICES

• Formation and orientation: social, educational or labouring concerned, for those affected by Hemophilia or other inherited bleeding disorders, carriers of the disease, their families, etc. For such work you can count with two Social Workers.

• Psychological Attention.

  Psychological attention for those affected by Hemophilia, or other inherited bleeding disorders, carriers of the disease and their families, by a psychologist.

• Formation through Workshops and Formative Journeys.

  1. These are useful not only for formation but also for the information to those affected by Hemophilia or other bleeding disorders, carriers of the disease and their families to endow them the necessary resources and instruments to improve their quality of life. Public Affairs involving Formation Techniques in Hemophilia.

  2. For professionals and students: The main aim is the formation and information about the Hemophilia or other bleeding disorders, and the last advances in Hemophilia.

  3. Campaings for Social Sensitivity on Hemophilia, focused on different collectives, as people under age or juveniles (especially those in secondary), such campaings will be focused on the school´s network of the province, in which we will offer different lectures to approach the actual problem of Hemophilia to the students.

• The Information Bulletin VIDAHETE.

  The divulgation of the news that are important for the collective will take place through the Information Bulletin VIDAHETE, its character is monthly and it is elaborated by the members of the Association.

• Leisure and Free-Time Activities.

  The celebration of the Annual Benefic Dinner to collect funds to be able to continue improving our activities in favour of those people affected by Hemophilia, other bleeding disorders, carriers of the disease and their families. The Benefic Dinner is addressed to the affected, carriers and their families, the collaborators of the Association and all people sensitive enough with the problem. There are also important events as the Volunteer´s Fest, which is the meeting point of different Associations and Organizations without government´s welfare of the Tenerife Island.

• THE MAIN AIMS OF THE ASSOCIATION ARE THE FOLLOWING ONES:

  To offer complete attention for those affected by Hemophilia and other bleeding disorders, as well as carriers and families about social, medical, sanitary, educative, labour tasks and other aspects to contribute improving their day-life quality.

  To promote Associations of residents in the Province of Santa Cruz in Tenerife, with an inherited bleeding deficiency, through the access to services and activities and also as an alternative way for the vindication of their rights to make their social and medical conditions better.

  To Stablish, Maintain and Develop via communication, the connection with social agents that appear as helpful to improve, directly or undirectly, the day-life of our collective.

  Sensibilization and Conciousness of the society, institutions and organizations about Hemophilia and the problems posed over such disease through campaigns and many other public affairs that would be favorable for the exchange of information about Hemophilia and its characteristics.

  To spread the information about Hemophilia and the existence of the organization, with its uses and and purposes, to make it accessible to people interested in our information and services.

  To Offer formation to Hemophiliacs, carriers and families as well as professionals through public activities to spread their knowledge of the disease and the new medical and social advances.

  To Keep in contact with other Associations of Hemophilia in Spain and around the world to exchange information and experiences, that shall contribute to a nearest vision of the situation of the disease in each part of the world.

DO YOU WANT TO FIND US?

We are in the Association of Hemophilia in the province of Santa Cruz of Tenerife, AHETE, Camino del Hierro, 120 Viviendas, Bloque 1 (locales 1 y 3), 38009 Santa Cruz, Tenerife.
Canary Island - Spain
Tfno: 922 65 72 01 Fax: 922 64 96 54
Web: www.hemofiliatenerife.org
E-mail:info@hemofiliatenerife.org

In 1972 the Spanish Association of Hemophilia was created, then, and derived from political manoeuvres, the Spanish territories were divided into Provinces until 1989, when the actual Spanish Federation of Hemophilia appeared. Throughout all those years of existence the main aim has been centered in the obtention of benefits for the collective of Hemophiliacs in Spain.

The Spanish Federation of Hemophilia is an organization at the service of the hemophiliac to bring them the necessary information, collaboration and help for their formation in an integral way to make them autonomous and also to help them in their integration in their families, their society and their fulfillment, as human beings. If you require more information about the Spanish Federation of Hemophilia, you can connect with the Web: www.hemofilia.com., web in Spanish.

The Association of Hemophilia in the province of Santa Cruz of Tenerife, AHETE, is member of The Spanish Federation of Hemophilia that is a not-for- profit organitation, without government´s welfare, Association and active member of World Federation of Hemophilia and of the European Hemophilia Partnership.

The Spanish Federation of Hemophilia, is composed by the following Associations: Aragón-La Rioja Association, Association of Hemophilia of Andalucía, Association Asturiana of Hemophilia, Cántabra Association of Hemophilia, Balear Association, Burgalesa Association, Leonesa Association, Salmantina Association, Extremeña Association, Gallega Association, Association of the Community of Madrid, Murciana Association, Navarra Association, Association of the Province of Las Palmas, Association of the Province of Tenerife, Valenciana Association, Alavesa Association, Guipozcuana Association and Vizcaína Association.

The World Federation of Hemophilia is an international not-for-profit organization dedicated to introducing, improving, and maintaining care for people with Hemophilia and related bleeding disorders around the world. The WFH focuses its activities on the following areas:

Through our network of committed volunteers and associated stakeholders, the World Federation of Hemophilia acts as a catalyst to bring about needed change. To this effect, the WFH works with national Hemophilia organizations, health care providers, and government officials to foster quality health care for people with bleeding disorders.

If you require information in other languages, you can also connect with the Web of the World Federation of Hemophilia: www.wfh.org.