My name is Sara.  I am 22 and have just completed a Bachelor of Arts degree studying with Griffith University though Open Universities Australia.  I am vision and hearing impaired and also have diabetes type 1.My hearing difficulties were evident from a young age and by the age of 8 I was wearing both hearing aids and glasses.  A year later I was diagnosed with diabetes and many, many tests to find any relationship between these conditions led to the diagnosis by a neurologist of a rare condition called Wolfram Syndrome, a degenerative disorder of the central nervous system.  Basically this means that I defect in a particular gene has led to the presence of a protein in particular nerve cells in the body which prevents blood from getting in and out of the cells.  So, therefore, they gradually die due to lack of nutrition.

Therefore, my hearing and vision have slowly been deteriorating since then and really began to affect the way I did things at the age of 13.  High school for me was not fun.  I didn’t know how to deal with it, my teachers didn’t know how to deal with it, and neither did my peers as, for the sake of not being “different”, I made no point of explaining these things to them.  My teachers learnt how to assist me with learning eventually but I never really made friends at school.

Given these things, I was wary of studying on campus and chose to study through Open Universities.  I have had much assistance from Griffith to allow me to study despite my deteriorating sight.  Exams were enlarged and I was permitted to type my responses up on a computer.  After a time my exams were then provided to me on USB and the software I use on my computer read the exam to me as it does with everything else I do.  I have been granted extensions for unusual circumstance when necessary and some assignment criteria have also been altered for certain reasons.

My hearing has been stable for 6 years now although my vision is still going.  I have learnt music all my life and am now a pianist and harpist with the view of turning those pursuits into a profession.  I compose and arrange my own music and sing, too.  I also plan to be a writer in various forms as my study has involved journalism, literature and screenwriting.  I am currently working on a novel and trying to break into the journalism industry through freelance writing.

Wolfram Syndrome may lead to many other neurological problems which may affect my orientation and mobility and may also prove fatal, such as loss of nerve control in the legs, heart, lung, liver and/or kidney failure.  There is actually much heppening on the research side of things at the moment due to much funding in the United States which is hoped to lead to a treatment for the condition but the underlying motto has always been “you’re here now”.