Monday 19 August 2019

'I had dreams of becoming a professional performer. But I can't dwell on that now' - woman given shock diagnosis in her twenties

Diagnosed with multiple sclerosis in their twenties, Ciara O'Meara and Jennifer Mangan are seeing another side of living with the often debilitating condition - despite setbacks and pain

Ciara O’Meara is determined not to let MS define her. Photo: Andrew Downes, xposure
Ciara O’Meara is determined not to let MS define her. Photo: Andrew Downes, xposure
Jennifer Mangan is also living with the disease. Photo: Colin O’Riordan

Arlene Harris

Multiple sclerosis (MS) affects 2.5 million people worldwide and an estimated 9,000 in Ireland. And during the month of May, Multiple Sclerosis Ireland is running a campaign to encourage people to 'Kiss Goodbye to MS' by taking part in the Wear, Dare and Share event - by either wearing red or holding a 'red' day at work, daring to get sponsored for an MS Ireland sky dive or sharing with friends and family to spread the word.

There are twice as many female sufferers than male and the disease, which affects the central nervous system, is most common among young people.

Indeed, when Ciara O'Meara was just 22 years of age, developing a crippling condition was the furthest thing from her mind.

"In 2008, I was in the middle of my nursing exams when I experienced my first symptom," says the clinical nurse manager. "I developed blurred vision and persistent dizziness and was at the point in my studies where I knew just enough to self-diagnose, so thought I was suffering from vertigo and stress due to exams - the college doctor confirmed this and gave me a prescription.

Jennifer Mangan is also living with the disease. Photo: Colin O’Riordan
Jennifer Mangan is also living with the disease. Photo: Colin O’Riordan

"Within a week the vertigo was gone but a few months later, I woke with pins and needles from the top of my right toes up to underneath my right breast. I was worried but didn't panic. Making sure I wasn't having a stroke, I got dressed, went downstairs and said to Mam that I couldn't feel anything on my right side. My little brother, who was only 12, gave a laugh and kicked my leg to see if I was messing - we all knew I wasn't when I didn't even flinch."

The Tipperary native, who lives in Galway with her partner Dave, went straight to the doctor, who sent her to A&E for admission and a neurology review.

"I was naturally worried but I wasn't upset - I felt there was something wrong and I needed to get it figured out and sorted," she says. "I was admitted that afternoon and the next day a consultant came and told me that I might have MS. I will never forget the manner or insensitive nature in which it was delivered. This doctor approached a 22-year-old, on her own in a hospital bed with no support and didn't as much as grace me with an introduction.

"I was in disbelief and have no idea what she said after that. All I could gather was that I was to have an MRI and be referred to a neurologist. I knew I had to stay strong - for my family and for myself - and kept focusing on what the doctor had said: 'We think you have MS'. She has no MRI to go on, I have had no lumbar puncture to diagnose it and she wasn't a neurologist - so until I had evidence, I wasn't willing to accept any opinion."

Ciara (now 32) had an MRI done and while waiting for results, refused to believe she could have MS and instead went to see a physiotherapist to help with the numbness. At her neurology review, the consultant felt that her MRI "didn't warrant a diagnosis of MS" and she was told to come back a year later for a check-up.

Delighted with the news, she continued her life as normal and while the pins and needles remained, she was determined not to worry. So when she was called back for an appointment just a few months after her second MRI, she immediately knew that something was wrong.

"I knew how the HSE worked and no one would be called for an earlier appointment unless there was something wrong," she says. "So I knew what he (the doctor) was going to tell me before he even opened his mouth. I didn't cry but I was sad that MS had chosen me to latch on to, sad about the unpredictability and uncertainty that life now held and worried about the effect it would have on me having children.

"The registrar gave me information booklets on different types of treatment and told me to read them, decide what I wanted and come back so they could write the prescription. And that was it. One of the biggest decisions of my life was placed in my own hands without any opportunity for guidance or support."

After researching the information, the young woman decided on a course of medication which involved three subcutaneous injections per week, which she would administer herself.

"This was my element of control and life continued as normal," she says. "As far as I was concerned, MS was an unwanted passenger in the car; there was nothing I could do but acknowledge it and continue in the driver's seat of my own life."

This medication worked well for eight years but last year Ciara experienced increased lethargy along with bladder and bowel issues which she put down to an active social life - but this was not the case.

"My MRI told a different story as these symptoms were indicative of a relapse and new lesions had appeared," says Ciara. "The medication (Rebief) had done its job but could do no more - my body needed a new drug. This time, I cried as this was a major setback. I had no choice as to what day I could take the medication and starting a family was a concern as I was told not to start one for two years, to give the medication time to work.

"I know there are many women with MS who have children and I know there is no evidence to state that women with MS can't start a family, yet at the time I couldn't focus on anything else.

"We were renovating our first home and this loss of control was forcing me to question everything."

But as she got used to the new treatment, Ciara learned to live with her condition and all it entailed. "MS with all its obstacles and hurdles has made me appreciate life more," she says. "I'm doing very well, working full time, living for the weekends and for time with loved ones. So I would tell anyone newly diagnosed that it's not a death sentence.

"I don't want sympathy. I never want to be referred to as the girl with MS. I have worked too hard and value my individuality too much to be known as anything other than Ciara - the nurse, the teacher, Ciara that graduated with a Masters, that's known for a good sing song and lives for the buzz of amateur drama and performing. That's Ciara - nothing more, and certainly nothing less."

Jennifer Mangan has also experienced the shock of an MS diagnosis at a young age. Now 25, in June 2016, she developed severe pain in her back and right side of her body.

Studying musical theatre at the time, she had performed in a succession of shows and put the pain down to too much physical exertion. However after receiving treatment from a physiotherapist, the pain didn't abate and it wasn't long before part of her body was completely numb.

"I couldn't feel anything even if I was stabbed by a pin," she says. "I attributed this to a trapped nerve or twisted ligament so went to see another physio who ordered an MRI which came back as fine. I was told to get on with things and even though I wasn't too happy with it, I carried on until the pain became too much and I went back to A&E.

"I was kept in for tests, including a lumbar puncture, which was so scary and painful; then the doctor told me I had MS. This had never crossed my mind - it was such as shock."

The Dublin woman, who works as a music teacher, says the news was a 'nightmare' and for the next 18 months tried to adapt to the reality of living with a crippling condition.

"Within the space of a week I went from being a healthy woman to getting a diagnosis of MS - it was a very difficult time," she admits.

"The year-and-a-half that followed was extremely tough - I was constantly sick, relapsed numerous times, was in and out of hospital and on and off different drugs. I was also dealing with side effects which included constant pain, nausea, severe fatigue and numbness. The medication also affected my mind so I couldn't think properly and my personality changed a bit for a while."

Jennifer was on steroids and had to inject herself with medication daily, which worked fine until she had a relapse which caused her to go numb from the waist down.

"That lasted for six months and was very difficult to live with," she says. "Then my medication was changed and I improved dramatically, so now I am in good health and haven't relapsed since.

"I still get day-to-day symptoms and if I'm run down, will get slightly numb, but it doesn't last. The main symptom I suffer every day is pain - this is very debilitating and hard to deal with as I was a very active person before and had dreams of becoming a professional performer. But I can't dwell on that and try to stay positive. I am in a much better headspace than I was before and refer to myself as a warrior.

"I'm looking at going back to college and keeping fingers crossed that my future is bright. I can't spend time wishing things were different, because I am 100pc better individual than I was prior to getting the disease because of all the lessons I have learned and roads I travelled to get here.

"I like the person I have become and can't say I wish it didn't happen as then that wouldn't be me.

"So I would say to anyone else who has just been diagnosed to keep being a warrior as there is hope."

⬤ Multiple sclerosis, meaning 'many scars', is the most common neurological disease of young adults.

⬤ It affects more than 9,000 people in Ireland.

⬤ It affects the motor, sensory and cognitive functioning of the body and is usually diagnosed between 20 and 40 years of age.

⬤ The impact of MS on individuals, their families and the community can undermine the resilience that is needed for individuals to remain purposeful and in control of their lives.

⬤ There is no known cause or cure.

Symptoms vary from person to person. The frequency and severity is also unique to each person living with the condition.

⬤ Common symptoms include; fatigue, numbness, weakness, loss of sensation, spasticity, mobility issues, balance issues and vision issues.

⬤ For more information, visit ms-society.ie or call 1850 233 233

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