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MS Squad Member Susan tells her story

Susan a MS Squad member smiles for the camera as she shares her MS story.

Susan Carey, a MS Squad Member, was told she had a life-changing medical condition in 2004 – she was only 14 years old at the time. But looking at her now, there is no doubt that getting such a devastating diagnosis does not mean the end of the road.

Susan, who grew up in Ireland, says sport was always an important part of her life. “I’ve even got an All-Ireland medal for the sport” she says.  Golf is another abiding passion for the family. As a young teenager, Susan was already an active junior member of her local golf club, and that’s where she began to suspect something was amiss.

“I couldn’t understand why I couldn’t hit my golf ball,” she recalls. “I also had problems playing basketball. But eventually I realised I was seeing two balls, instead of one. So mum took me to the optician.” Having examined her, he immediately referred Susan to Cork University Hospital (CUH). Some 48 hours later, she had already been admitted, and was undergoing a battery of tests, including a lumbar puncture.

And even though she was in hospital for more than two weeks, she didn’t question what was going on. “At 14, I didn’t have a clue,” she says. “I just assumed the adults would sort it out.” Two weeks after her discharge, Susan returned to the paediatric neurology department at CUH for a follow-up consultation.

“There were others in the room,” Susan recalls. “They did various basic neurological tests, such as getting me to follow their hand movements with my eyes. Then I was asked by the consultant to leave the room, and that’s when my parents were informed that I had multiple sclerosis (MS). I was then brought back in, and I was told. I had no idea what MS was, and I couldn’t comprehend what a neurological condition was. But it became clear that this was not just about getting glasses – it was much more serious than that.”

As time went on, Susan became increasingly distressed. “I used to be on sports teams. I was outgoing, bubbly and at the centre of things. At that age, you care about what people think,” she says. “I was ashamed and embarrassed to tell people I had MS. I thought I wouldn’t get a boyfriend and that my friends would drop me.”

In 2010, Susan began using a specific drug for MS. “My legs got stronger,” she recalls. “I started going to gym and I joined a fitness group in Cork. Exercise causes endorphins to be released; these lessen pain and make you feel better. It helped me channel my negative energy into positive energy. Lifting weights also makes me feel powerful. Seeing that some young lad next to me can only do a fraction of what I can do, makes me feel like Superwoman!”

However, a few years later, that drug became less effective, so Susan’s neurologist suggested she try another one, that was fairly new on the market.

Fortunately, that drug worked for her. Nonetheless, in 2012, and again in 2014, she had a relapse, which caused her to end up in hospital. But each time she fought back, until she was on her feet again.

Currently, Susan is doing really well. She has a part-time job as an administrator in a car dealership, and in her spare time goes to the gym and to a driving range. She has two ambitions in life: one is to get involved in the promotion of sport in relation to disability.

“I’m involved with the local MS society, and that’s helping my confidence,” she says. “I know what it’s like to feel really low. So I’d like to help people with MS feel empowered again.”

And her second dream? “I’d love to teach myself to play golf again,” she says. “Then I could hit some balls around the stunning course at the Golf Club.”

Susan is now MS Squad member and is leading the way for 2018.

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