SAIDA - The South African Inherited Disorders Association

Haemophilia is any of several metabolic bleeding disorders. Excessive bleeding occurs owing to the absence or abnormality of a clotting factor in the blood. The condition causes dangerous haemorrhages internally and into the joints and muscles, resulting in severe pain and eventually causing crippled limbs. It leads to interrupted education and eventual difficulties in obtaining and keeping employment. Frustration and depression so engendered can be the cause of social difficulties.

The incidence of Haemophilia A is about 1: 5 000-1:10 000. Haemophilia B is less common (about 1: 50 000). They are both X-linked genetic disorders affecting mainly males with females being the carriers.

In June 1970, a national congress was held in East London and the South African Haemophilia Foundation came into being. Shortly thereafter, the Foundation was admitted to membership of the World Federation of Haemophilia. The Foundation is comprised of seven voluntary committees for the Western Cape, Eastern Cape, Kwazulu-Natal, Free State, Northern and Central Regions. The Foundation has as its mission: to provide a fellowship for persons with haemophilia and similar conditions, for their families and those concerned in their health and welfare; to promote the interest of persons with haemophilia and similar conditions; to financially assist (where possible) persons with haemophilia; to strive to facilitate adequate treatment facilities and access to safe products for the treatment of haemophilia. For more information please contact Sr Anne Gillham, the haemophilia nurse coordinator agillham@haemophilia.org.za or visit their site at http://www.haemophilia.org.za

Haemophilia Nurse Co-ordinator

SR Anne Gillham
P.O Box 818
Pinegowrie
2123
Tel/Fax: (011) 787-6710
Email: agillham@haemophilia.org.za
Website: http://www.haemophilia.org.za

The SA Haemophilia Foundation: Gauteng

Mrs Sheila Scott
79 Honiball Street
Rynfield
Benoni
1501
Tel: (011) 849-1733

The SA Haemophilia Foundation: Kwazulu/Natal

Mr J Schimper
Tel: (031) 701-6503
Cell: 082 800 7812

The SA Haemophilia Foundation: Free State

Mr T Swanepoel
Tel: (051) 436-6954

The SA Haemophilia Foundation: Western Cape

Mrs J Butler
Tel: (021) 654-6468

The SA Haemophilia Foundation: Cape Town

Mr Bradley Rayner
Cell: 082 882 6420

The SA Haemophilia Foundation: Port Elizabeth

Mr Mark Morris
Cell: 082 800 9477

The SA Haemophilia Foundation: Pretoria

Mr & Mrs Graeme Wright
Tel: (012) 654-6141

The International Birth Defects Information Systems (I.B.I.S) The International Birth Defects Information Systems (I.B.I.S) is a multi-lingual website dedicated to promote better care, wellbeing and prevention of malformation and developmental disorders through information sharing. IBIS Appeal IBIS Newsletter

Medical Genetic and Counselling Services Genetic counselling is a process whereby patients and their families are assisted in addressing their concerns relating to the development or transmission of a genetic disorder. Medical diagnosis, prognosis, the genetics and recurrence risks of the presenting disorder, together with providing families with options to deal with their risks and manage the disorder in the best possible way, are the primary aims of our genetic counselling service. The multidisciplinary team consists of medical geneticists, medical officers, genetic counsellors and students in training. To find out more about genetic counselling, click here. To find out more about genetic counselling clinics, please contact Mrs Zain Jakoet on the following. Tel: (011) 489-9224 Fax: (011) 489-9224

The Department of Human Genetics, University of the Witwatersrand The department of Human Genetics at the University of the Witwatersrand has published information on the commoner genetic disorders in South Africa. Please click here for more information.

The South African Society for Human Genetics The Southern African Society for Human Genetics (SASHG) is a non-profit organization for health care professionals involved and interested in Human or Medical Genetics. Please click here for more information.