Charlotte Varcoe
AFTER being diagnosed with neurofibromatoses six years ago, Mount Gambier woman Sylvia Muller was overjoyed to see the iconic Lady Nelson lit up in support of the condition.
On Tuesday night, the landmark shone in green and blue with Ms Muller saying it was touching to have recognition for the condition she had been dealing with for so long.
Neurofibromatoses is a group of genetic disorders which causes tumors to form on nerve tissue throughout the body, including the brain, spinal cord and other nerves.
The condition has three different types, including neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis.
Ms Muller was diagnosed with neurofibromatosis 2 in 2016 after years of struggling to find a reason for her ailments.
After securing a diagnosis, Ms Muller found out the tumors were situated on the nerves connecting her inner ear, causing her hearing to become progressively worse.
“After years of going from one doctor to another, trying to find out why my hearing was progressively deteriorating, no one seemed to be able to help,” Ms Muller told The Border Watch.
“I was shocked to hear that I was getting old or possibly a hypochondriac and it took six years of this before a doctor – who I have immense gratitude for – took me seriously enough to have a scan.”
She said after getting the news about the tumours, it was a form of relief to know something was wrong.
“I am hoping that sharing the word on this condition will help others also navigate the system,” Ms Muller said.
“Daily living has changed dramatically since my diagnosis as some days are better than others but I have had to make the tough decision to leave work, which I did in 2019.
“There are also mental challenges of adjusting and concentrating to do things I normally would do with ease or take for granted which then becomes extremely tiring and can cause frustration.”
Ms Muller said the most difficult part of her diagnosis and living with the condition was not being able to hear her grandchildren’s voices and coming to terms that there is no cure for her condition.
“I am constantly monitored by MRI scans so I go to Adelaide regularly to see an ear, nose and throat specialist, and a neurologist, but all they are able to do is watch and wait,” she said.
Determined to live as normal a life as possible, Ms Muller said she would not let her condition prevent her from living a fulfilled life.
“Connecting with others who are living with this condition would be a major benefit because you do become isolated and feel like you are battling every day on your own,” she said.
“This is why, when I see landmarks lit up to help the condition come out of the shadows, it brings me freedom and joy.”
