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Christmas Appeal 2018

3rd December 2018

Allow me to share a story with you about one of the people we are honoured to help with our work at the MS Society SA/NT. I hope you can help us?

Her name is Nicolia, aged 20, and she was diagnosed with multiple sclerosis (MS) at the age of 19. As you can imagine this was a shock to not only Nicolia herself, but it also closely affected her entire family.

I am always inspired when I hear the stories of the people we help and this one is particularly touching. When a person is diagnosed with MS and they turn to the MS Society for help, they are often accompanied by a family member. In this case, it was Nicolia’s mother, Anna.

As you can imagine, talking with the mother of a child with MS is an emotional conversation. To hear her say how helpless she felt, as there was nothing she could do to help her daughter was very difficult.

You can help us further our vision, empowering people to live well, and supporting research.

In January 2018, Nicolia began to have a chronic headache; it was a pain she had never experienced before. This was accompanied by blurry vision in her left eye, which lasted for about a month. During this time, she had just started a new job. Keen to impress and not take time off, she would come home from work and have to sit in her room in the dark to recover.

Finally, after her mum and dad became concerned, she went back to the doctor to see if there was something she could get for the pain.

When she started explaining the other symptoms she was experiencing and explained she had been numb from the chest down for three months back in 2016, the doctor sent Nicolia for a CT scan, which led to an MRI.

The referral form was given to Nicolia and in the comments, it said ‘possible MS’.

This is the part of the story, when as a parent myself, I started to become emotional. Her mother, Anna saw that comment and began to cry. The entire family was saying, ‘no, surely not? She is too young’. Her father became very emotional fearing the worst. This was very difficult for other family members to witness.

MS is the most common chronic neurological condition affecting young Australian adults with the average age of diagnosis between 20 and 40 years of age!

Nicolia was referred to a neurologist who advised that multiple sclerosis was in fact a major possibility. To finalise the diagnosis, Nicolia had to undergo a lumbar puncture with an extra eye test to see whether she had optical neuritis—and if this was the reason, her right eye had been blurry for a few months.

A lumbar puncture! This process is very distressing and painful. When Nicolia shared this with the team at the MS Society, it was clear the thought of that day was overwhelming and distressing.

We want to help people like Nicolia by providing much needed services and support and we need your generous support to do just that.

So the waiting began…

It was a month before the results from all the tests came back, which, as you can imagine, was a very nerve-wracking experience. The day had finally come and as Nicolia walked into the room with her parents, the neurologist said “this is clinically, definitely Multiple Sclerosis.” The previous tests had shown white blood cells trying to get to the brain and there had been inflammation on the nerve in her eye.

Nicolia was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS).

Currently, there is no known cause and no known cure for MS. In South Australia, there are around 2,300 people living with MS and each week three new people are diagnosed with MS. The team at the MS Society are committed to empowering people to live well and supporting research to strive towards better treatments, as well as finding a cure. The MS Society aim to be the leading provider of reliable information, allied health, and social supports to help minimise the impact of multiple sclerosis and other neurological conditions within the community.

We want to ensure the MS Society is able to support people like Nicolia and her family, now and way into the future.

Once diagnosed, Nicolia could start to piece together why she had felt certain ways in the past. While on a family holiday in Greece for a month, a year before the diagnosis, she understood why she simply could not leave the hotel room for many days whilst the rest of the family were out sightseeing, as she just had no energy.

Fatigue is a major symptom for people with MS. Ordinary activities that the rest of us take for granted are often impossible at times.

Nicolia said the biggest piece of the puzzle was going through chronic fatigue throughout year 12 back in 2016. Thinking it was just the stress resulting from the final year of school; it seemed she was the only one of her friends the stress was affecting so strongly, and in unusual ways.

We are also passionate about supporting people with MS to make the best decisions when they are faced with many options at a stressful and emotional time.

“To be diagnosed at the age of 19 I didn’t realise my future had completely changed. Thankfully with the support I have been given from my doctors, family and the MS society, I have been able to accept that this is now my new reality and I am still in the process of figuring out what my future will bring.”

You can help us to be by Nicolia’s side while she figures out her future.

Please help by making a donation to enable us to fund services not covered by the government and other revenue streams—including our client outreach programs and the support provided by our nurses, physiotherapists and social support.

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We thank you in advance for your support.

Yours sincerely

Andrew Ellis
Chief Executive Officer

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Christmas Appeal 2018