See The Person First

4 Dec 2013

My name is Sahar, I am 30 years old and live in Brisbane, Qld. I am deaf and also living with Spinal Muscular Atrophy (SMA).

I was diagnosed with it late last year after several unexplained cases of severe muscle weakness, unsteady gait, clumsiness, tripping/falling over, etc. It was diagnosed after a muscle + nerve biopsy and gene tests. I work as a Disability Support Worker with several organisations: Blue Care, CPLQ, CODA, and Baycare.

I do love my job because it gives me a chance to help others, which is something that I like to do and enjoy doing it very much. A person with a disability is first and foremost a PERSON. with emotions, and feelings, and needs just like everyone else. We must see the person first, NOT the disability- whatever it may be…..

I enjoy dancing, and have most recently been in a dance competition and came in 3rd place, which is pretty neat!  I have ”retired” from this though, as I am unable to hold my own weight up at times, and it does get too tiring for me. I can walk at this stage, but this is getting bit difficult too, I can”t climb up a flight of stairs without help and even going downstairs can be risky at times if I am unstable.

At current there is no known cure for SMA, or any other neurological disease such as MND, MS…..

The gene that is responsible for SMA has been found, but as yet, there is no known cure for it.

I hope that some day, with intense research, a cure will be found for SMA, MND, MS, and all the other neurological diseases that no one should have to live with. ….. I wish everyone the best of health and happiness.

 

Bless you all…..

Regards, Sahar

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