Efforts are under way today for World MS Day to raise awareness of multiple sclerosis.
Multiple sclerosis (MS) is an autoimmune disease for which there is no known cause or cure.
However, treatments are available to modify the course of the disease and manage symptoms.
There are 9,000 people in Ireland living with MS, which is the most common debilitating neurological condition affecting young adults.
Multiple sclerosis affects the motor, sensory and cognitive functioning of the body and is usually diagnosed between the age of 20 and 40.
To mark World MS Day, a Virtual Balloon Race will take place at 9pm tonight, with a balloon flying for each person here who has it.
Speaking to The Pat Kenny Show on Friday, two women who were diagnosed with MS shared their perspective on what it is like to live with the condition.
Susan Carey from Kerry was 14-years-old when she realised something was amiss.
She was an active sportswoman, winning an All Ireland medal for basketball, but it was when she was competing in a golf tournament that she noticed she was experiencing double vision.
"I didn't think a whole lot about it until I was on the basketball court and someone would pass me the ball and I would totally miss it," she said.
"I was so frustrated and I eventually figured I needed to get glasses."
The optician raised his concerns that something wasn't right and that Susan might have a tumour or MS, and she went to Cork University Hospital for tests.
She was eventually diagnosed with MS and in 2011, which was unusual given her young age, and she was put on a trial drug used to treat leukaemia.
"At the time, they had very little information about it and it was a leap of faith, stay the way you are now or go with it and see what happens," Susan added.
"I took the leap and never looked back, and it's fantastic."
What an amazing response to our #WorldMSDay virtual balloon race🎈
Let's keep this momentum going & have 9,000 virtual balloons flying, 1 for each inspirational person living with MS in Ireland.
€5 each, race launch May 30 @ 9pm https://t.co/VxVCSEQncY#9000balloons pic.twitter.com/MdLPgt5CHv— MS Ireland (@MSIRELAND) May 30, 2021
Naomi Donaldson, who is from Dublin, was diagnosed before she was 30, but her sister had been diagnosed at the age of 21 the previous year.
"There was a big difference in age but I had known for about four years that something wasn't right," she said.
She had issues with her vision, and at one stage, she completely lost her sight in one eye, only for it to return a few days later.
Naomi was similarly sent to an optician but when her sister was diagnosed, her symptoms were taken "much more seriously", and she subsequently received the same diagnosis.
"I was diagnosed about 12 weeks before I got married and I was in the shower one day and my right arm felt this really intense burning pain and I hadn't realised that my arm was actually burnt from the heat of the shower but I couldn't feel it," she explained.
'A whirlwind year'
The first day she began treatment for her MS was on the day she was trialling her hair and makeup for her wedding, while the first time she administered her medication by herself was on her 30th birthday.
"It was a bit of a whirlwind year, being diagnosed with MS, turning 30, getting married," Naomi said.
"There was a huge concern when we got married about having children and the staff in St Vincent's were amazing, there were no concerns and we have a little boy, Evan, now who is four and my MS has never impacted my health in terms of having children.
"It was something to keep me going, the same with the wedding, I was so focused about getting married that I didn't have time to worry about MS and now I'm so worried about Evan I didn't have time to worry.
Naomi is doing "absolutely brilliant" with her treatment now as she is on an oral medication once a day and hasn't had any neurological issues since 2013.
You can contact the MS Ireland Infoline on 1850 233233, and find out further information on the Multiple Sclerosis Society of Ireland here.
