The average age of Multiple Sclerosis diagnosis is 30 – 32, hitting people in the prime of their lives. This affects many life experiences such as raising a family, building and sustaining a career, earning an income to support a family or simply being an active, healthy member of society.
Mez Gallifuoco, is a proud Kiss Goodbye to MS ambassador. At only 29, she is highly regarded for her successful digital agency Mezooze as well as her popular lifestyle blog Little-Soul.
Despite these achievements, Mez has had her own personal struggle with Multiple Sclerosis.
At only 18, she was diagnosed and told her future would be in a wheelchair and that she should not to plan on having children.
The painful pins and needles she was experiencing in both her legs rapidly progressed from her shins to her waist and after just one week she felt completely numb. “I could run a knife along my thigh and feel nothing,” Mez says. “I would burn myself in the shower, unable to feel the heat.”
Today, Mez leverages her substantial online following, raising awareness for MS Research Australia and helping to support researchers in their quest to find a cure.
The Carousel talked to this inspirational woman about the struggles of life with MS and how we can help.
When did you know something was wrong?
I woke up and I had painful pins and needles in both my legs. My family has a history of back problems so I assumed that it was a pinched nerve and I should go to a chiropractor. After about a week, the pins and needles progressively moved upwards and reached my waist.
My chiropractor told me straight away to see a Doctor. I had symptoms in both legs which indicated that it was an issue with my Central Nervous System. My GP’s reaction was that I had to straight away to get an MRI.
Two days later I had a diagnosis but due to the nature of MS they watched me for about six months to confirm.
How did the diagnosis change your life?
Being diagnosed with MS changed my life dramatically- not only did it affect my personality but my entire life changed. It is not common statistically to be diagnosed that young and it initiated a huge change in my character.
I was only 18 years old and working as a makeup artist. I had an entire life established and after the diagnosis I decided to completely change it. I instinctively stepped up and quit my job, a bit naively at only 18 perhaps. I became fascinated by the science of MS and so I enrolled in University.
Moments like that call for us to be a better version of ourselves. When I was faced with this intense challenge I had a call to action. I thought “I have to stop stuffing around and make sure I can look after myself, learn about this and do something”.
What is it like living with MS?
I find it difficult and at times, it is very testing. It varies from person to person but for me, I am constantly checking in on my body. I check how I’m walking and moving, whether my hands are shaking or if my vision is fine.
After 10 years, I have become very accustomed to being tuned in to my body. Recently I had a relapse, the left side of my body didn’t feel temperature or touch properly, and I would have nerve pain which resulted in sleepless nights.
How do you manage it?
As with any chronic illness or disease, it takes an extra level of self care.
Ambition and self care are two opposing forces. Having a chronic illness that shakes you to your core causes you to have this real sense of urgency. You feel like you need more time and you have to do everything at the same time.
That is the complete opposite to taking the time to look after yourself which is necessary.
I have really struggled with finding balance. I would end up doing too much and stress my body out and my symptoms would worsen.
Why is fundraising so important?
We need fundraising for the research. One doesn’t work without the other. We depend so heavily on the little people, grassroots level fundraising, not the big corporations.
For MS research Australia, such a huge percentage goes to grants and research directly. It is such a great organisation and we need to focus on that. With MS research, we have hit a catalyst with what we know. Treatments are coming out yearly that are revolutionary. We have gone from 40% of slowing down in the progression of MS and relapsing to 70% in only four years.
The treatments are quite invasive and the side effects are strong. A lot of the money needs to be in invested in the quality of life for patients because there are so many of us in Australia, and such a large percentage of them are women.
A lot of the treatments are injections, the one that I was on was an infusion which meant that I was there for four hours hooked up to a machine. They are not soft treatments; they are full on. For example, my injections made me sick for two days, I would throw up and have chills and fevers. That was is an extra burden to deal with whilst working and studying or any aspect of life.
The fundraising not only goes to research, treatment but also quality of life and support for patients, which is so important.
What would you tell someone who has just been diagnosed?
Being diagnosed can be incredible confronting. The initial shock stops you from knowing what to do. People tell you all different things. The number one thing that I encourage people to do is to research and educate themselves. Those are the most powerful tools. There is such easy access to amazing opinions and information by doctors. At the end of the day, you will know what is best for you, but you need to make an educated decision. It is very daunting when people don’t understand what is happening.
It is important to know what you are dealing with and reach out to the organisations because there are great support groups out there. The research itself can be confronting as well so they will help with that.
Researching allows you exercise independence, responsibility and too regain the control that you feel you have lost through the illness.
If you are vocal about it and try to create an environment for yourself where you can flourish than you can achieve a lot with MS.
3 Facts About MS
1. MS is a chronic and debilitating disease affecting over 23,000 Australians. There is currently no cure.
2. Every day 4 Australians are diagnosed with MS – 3 of which are women.
3. MS is the most common disease of the central nervous system in young adults with the average age of diagnosis just 30 years old.
Why support the Kiss Goodbye to MS campaign in 2016…
– Kiss Goodbye to MS is the national fundraising campaign for MS Research Australia
– There are currently over 850 researchers in Australia contributing to MS Research
– Funds raised this year will go directly towards research into finding a cure, and focusing on the most debilitating form of MS, known as Primary Progressive MS.
– Associated with a greater level of disability, Australia knows very little about the devastating effects of Primary Progressive MS.
Let’s come together to raise awareness on social media by wearing red lipstick or something red and using the tags: #kissgoodbyetoMS and #StrongerThanMS!
