McCRAE lighthouse will be lit up in yellow on Tuesday 29 June to raise public awareness of the condition known as scleroderma.
The lighthouse will shine bright to generate support and to raise funds to support the 6000 people impacted by scleroderma and raise funds for research into fighting it.
The Lions Club of McCrae is supporting the Shine Like a Sunflower campaign against the chronic condition that causes thickening and hardening of the body’s connective tissue.
Louise Inglese, of Mornington, was diagnosed in February 2016 by her gastroenterologist. “The diagnosis came as a huge shock as I had never heard of scleroderma,” she said.
“Having a condition that nobody has heard of is a lonely business and when even the medical profession cannot recognise it, or tell you what is going to happen, it is lonelier still.”
She said early diagnosis saves lives and leads to control of the condition.
Ms Inglese struggles with what’s called Raynaud’s Phenomenon in her hands and feet and the damage to her digestive system results in many gastrointestinal tract problems. She says she is blessed with family and friends who offer “amazing support”. They have helped fundraise over the past five years with Snuggle Up for Scleroderma days, cocktail parties, garage sales, shave events and handed out Change for Scleroderma boxes to businesses and friends.
Ms Inglese runs the Mornington Peninsula/Westernport Support Group which meets monthly to support each other and keep up to date on research and developments for scleroderma patients.
Scleroderma Awareness Day was created to explain to people, including the medical community, what it means to have this condition. It recognises the bravery of those who live with scleroderma, and demands equal treatment and equal care for people with it.
The Shine Like a Sunflower campaign will run until World Scleroderma Day on 29 June.
First published in the Southern Peninsula News – 22 June 2021
