Rare Disease Day – 2019
With today being rare disease day, Edge’s Communications Coordinator Ashton, has written about her experiences living with the rare disease Cowden’s Syndrome.
I consider myself to be a pretty positive and resilient human being.
I have graduated from university, travelled around the world, had a short stint working in Melbourne and now I work in a job at Edge Employment Solutions, a job that I absolutely love. I sound like I’ve done ok for someone who is 25?
A lot of people have done things like this, but I’ve done it with a rare disease and a disability.
“A disability? A rare disease? You wouldn’t even know you had one!” is the usual response upon telling people this. But, it’s true I have a disability and rare disease. You can’t see it externally on my body, but it’s there in action internally.
I was born with a genetically inherited condition called ‘Cowden’s Syndrome.’ Cowden’s Syndrome is the mutation on the PTEN gene. Put simply, this gene in me is broken and my cells can grow out of control. I have a higher risk of certain cancers, but it is my brain that it has mainly affected, resulting in numerous procedures and induced epilepsy.
With a rare disease, brain condition and epilepsy, life has certainly been challenging. Because of my condition, I had to resign from my job in Melbourne and return back home to Perth. Unfortunately, I then spent the next 11 months looking for work. Looking for work had a huge impact on my mental health and wellbeing. The hardest thing about this was having to constantly motivate myself to keep applying for jobs and accept rejection, while coping with flair ups with my medical condition.
One day, a family member told me about Edge Employment Solutions, an employment agency that helps those people with a disability find employment. Intrigued, I chatted with Centrelink and found that I qualified to be a client with Edge. It was the start of something special that would have a significant impact on me.
From the first day that I walked into the Edge office in Subiaco, I have always felt like someone has had my back and would not give up on me. I come from a background in communications and marketing and had been looking for a job where I could expand my skills in these areas. Because of my health, I have been unable to do this, so when Frankie Broderick (my Employment Consultant) offered me a Communications Coordinator position at Edge, it was like a dream came true.
I’ve been at Edge now for 4 months and I come into work each day with the biggest smile on my face. Why? Because for someone who has a multitude of health challenges, I am working in a job I love.
I’m fulfilling my dream of working in a not-for-profit organisation, and writing about people’s stories. At the same time, my confidence and self-esteem has improved dramatically.
Today I celebrate ‘Rare Disease Day’ with many other people like myself. The theme for the 2019 Rare Disease Day is ‘Show your rare. Show you care’ I have shown Edge my rare and they’ve certainly shown me they care.
If you want to learn more about how Edge can help you, please contact us.