Life is twice as hard with Usher Syndrome

Southern Gazette (South Perth) - - OPINION - Com­mu­ni­tynews Kaylee Martin

BENT­LEY res­i­dent Wilma Brass spends hours play­ing her favourite tunes on the pi­ano or per­fect­ing her paint­ing por­traits with splashes of colour.

But with two sen­sory dis­abil­i­ties, Ms Brass does these ac­tiv­i­ties a lit­tle dif­fer­ently.

At age 26, Ms Brass was di­ag­nosed with Usher Syndrome, which left her with both vi­sion and hear­ing im­pair­ments.

Now in her late 50s, she uses three dif­fer­ent pairs of glasses for dif­fer­ent sit­u­a­tions, has two sets of hear­ing aids, uses a cane for the blind and a walk­ing cane and has re­cently ac­quired a walker.

While Ms Brass said Usher Syndrome did present her with chal­lenges, in some as­pects it had made her life much brighter.

“It sure has made my life more colour­ful, lit­er­ally. I need colour to be able to see. Black and white or light and dark colours are a lot harder for me to see,” she said.

“My home is equally filled with ev­ery colour.”

Deaf­blind Aware­ness Week ended on June 30 across Aus­tralia and aimed to bring sen­sory dis­abil­i­ties to light.

As a client of Bur­swood­based or­gan­i­sa­tion Senses Aus­tralia, Ms Brass said rais­ing aware­ness for peo­ple with more than one sen­sory dis­abil­ity was ex­tremely im­por­tant.

“Peo­ple do not un­der­stand prob­lems with dual sen­sory loss; they’ll come up with so­lu­tions that work for a blind per­son, but I’m deaf as well,” she said.

“A lot of el­derly peo­ple are be­com­ing deaf­blind and they don’t know what’s hit them, it’s so iso­lat­ing.

“All of a sudden you can’t talk with fam­ily for you can’t hear what they’re say­ing, you can’t see what they’re do­ing or what they’re show­ing you.

“Ad­just­ing to hear­ing aids alone takes time to get right; learn­ing all these new skills is so hard when you’re aging.”

Be­fore her of­fi­cial di­ag­no­sis, Ms Brass took up the pi­ano and be­gan draw­ing por­traits as a cre­ative out­let.

Pic­ture: Matt Jelonek d455662

Wilma Brass has Usher Syndrome, a dis­ease which has made her both vi­sion and hear­ing im­paired.

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