Spotlight on members of our community living with neuromuscular conditions: Tania Quill
Over the coming months we’re sharing spotlights on individual members of our community who are living with a variety of neuromuscular conditions. We began on Rare Disease Day, 29 February, to draw attention to the fact that rare disease isn’t just for one day. By sharing individual stories and information on their conditions, we want to raise awareness about the many neuromuscular conditions experienced by the diverse members of our community to whom MDI offers support. Special thanks to Tania for sharing her story and raising awareness about congenital muscular dystrophy. The spotlights will be added to a dedicated page on our website so that you can learn about people’s experiences of living with each condition.
Name:
Tania Quill
Age:
31
County:
Donegal
Type of neuromuscular condition:
Congenital muscular dystrophy, specific type unknown.
At what age were you diagnosed?
I was six when I was first diagnosed. The last time my biopsy was tested, around 11 years ago, the results found that there was no one with the same type of congenital muscular dystrophy as me.
What were your first symptoms?
My first symptoms appeared around 16 months after I started walking. I had difficulty climbing and I was slower than other children around the same age. I had poor balance, was falling frequently and more often than other children, and I had swaying/waddling hips.
Do you have other family members who have the condition?
No.
What do you find to be the greatest challenges in living with your condition?
Fatigue and lack of accessibility.
Is there anything you’d like people not to assume about you because you have the condition?
Don’t assume I cannot achieve something because of my disability.
What are your greatest accomplishments?
Achieving my Master in Private Cloud Technologies was a big achievement for me;
Learning to swim as a child;
Learning to drive and, recently, the improvements in my overall strength and mobility from going to the gym.
How has living with your condition influenced you into becoming the person you are today?
I've had the condition all my life, so I know no different, but I think it has made me more determined to achieve the things I want to achieve.
Is there anything you’d like to say or offer as advice to a person recently diagnosed with the condition?
Do not let the condition hold you back.
What do you want the world to know about your condition?
Not all physical disabilities are visible, and young people can have disabilities too.
Muscular Dystrophy Ireland supports people living with congenital muscular dystrophy and many other neuromuscular conditions. If you have any questions, you can contact us on our Information Line on +353 01 6236414 or on http://www.mdi.ie/contact.
You can find out more about congenital muscular dystrophy here.
Disclaimer: The views expressed in the content are solely that of the interviewee and do not necessarily reflect the views of MDI. Furthermore, please note that while MDI shares information about neuromuscular conditions, we do not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.