Director
Megan Fookes
My name is Megan Fookes and I am 39 years of age. I am married to my wonderful, supportive husband Mark and have 2 young children a girl aged 9 and a son aged 7. My son has Fabry disease along with myself. We live in Sydney Australia.
My first introduction to Fabry disease was back in 1994 when my father was diagnosed at the age of 48 and I was aged 23, making me automatically a ‘carrier.’ (Back then all women were simply ‘carriers’ of Fabry – we were under the impression that women did not have Fabry!) My father suffered many years of unexplained elevated temperatures, very painful hands and feet and spots around his midriff of which many doctors saw and could not explain. It was following a visit to a renal specialist who saw Dad’s badly swollen legs that contained excess fluid and his angiokeratomas, he received his diagnosis. What a relief to find that all those years of unexplained pain and suffering were not in his head, but in fact caused by this Fabry disease! My parents were keen to find out as much information as they could about Fabry. My mother formed the Fabry Support Group in Australia and had an article published in May 1994 in the Australian Women's Weekly Magazine. The response to this article was incredible and the Support Group was up and running. FSGA have been in operation for 16 years now. I have been actively involved with FSGA since 1999 following the death of my Father. I am the current President of FSGA with a fabulous committee working hard to help the Australian and New Zealand Fabry Community. As a trained primary school teacher and Mother of a young family, I am very keen to help others get a diagnosis and receive adequate care and treatment for Fabry Disease as soon as possible. In Australia we would love to see children and adolescents accessing Fabry ERT too! Australia and New Zealand are very isolated from the world. Combined in the FIN organisation, the world suddenly becomes smaller and the Fabry Community is suddenly quite large! I am very pleased to be part of the FIN Board and am passionate along with all FIN member organisations to help educate and raise awareness of Fabry Disease. FSGA www.fabry.com.au Contact me: megan.fookes@fabry.com.au
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