A dedicated supporter of raising awareness of multiple sclerosis joined forces with a new cafe at Illawong this year, to shine a light on a condition commonly described as "invisible".
Valentina Petreska of Menai, organised a fundraiser at Gumbuya Cafe for World MS (multiple sclerosis) day (May 30).
The 2019 campaign of the annual global day is called My Invisible MS and the theme is visibility. The aim is to educate the community about the often unseen symptoms and affects of MS on quality of life.
Multiple sclerosis is a condition of the central nervous system, interfering with nerve impulses within the brain, spinal cord and optic nerves.
It affects more than 25,600 in Australia. Most people are diagnosed between the ages of 20-40. Roughly three times as many women have MS as men. There is no known cure.
Symptoms of the disease may include pain, fatigue, visual problems, numbness/tingling, feeling hot and cold, brain fog (cognitive difficulties), depression, continence problems and balance issues/dizziness.
Ms Petreska's commitment to the cause began several years ago when her daughter Stephanie, 19, was diagnosed at age 16.
She has been hosting events each year since then, and also volunteers for several MS fundraising causes.
"It's life-changing. You wake up one day and your whole world is upside down," she said of discovering her daughter's diagnosis.
"Even though you can run, jump or dance, there's not a moment someone with MS isn't in pain. Someone may look perfect but others may not know what's hiding behind."
Children and young people diagnosed with multiple sclerosis (MS) typically relapse two-to-three times more frequently than adults, causing increased symptom severity.
MS is the most commonly acquired disease of the central nervous system among young adults in Australia. About five per cent of people with MS experience disease onset before they reach the age of 18.
Ms Petreska had a gut feeling something wasn't right with her teenage daughter. Stephanie started to get migraines, was falling over, and one time, fell down 20 flights of stairs at school.
"As a parent you know. It wasn't commonly diagnosed in females under 30," she said.
"We knew what it was within a week. She went straight to Tysabri, the strongest treatment ,and we go to hospital once a month. There are good and bad days but she has lots of support in the community. She does pilates to strengthen muscles, has a healthy diet, and does salt therapy to boost her immune system."
In May this year, Novartis announced that the Therapeutic Goods Administration (TGA) approved Gilenya (fingolimod) for the treatment of children and adolescents 10-17 years old with relapsing forms of multiple sclerosis.
The registration makes Gilenya the first licenced disease-modifying treatment for children and adolescents in Australia.
