Scleroderma Foundation Australia
I am starting a fundraiser for an extremely rare and unknown auto-immune disease called Scleroderma that affects only ONE in every 10,000 people, where women are affected four times as often as men.
It is a disease of the immune system, blood vessels and connective tissues and it can attack many body systems or just a few. Some symptoms can be visible like hard puffy skin on the hands, joints and face although the most severe symptoms are hidden interanally which can affect a persons lungs, heart, kidneys and gut.
This happens when auto-immune system malfunctions and the body places excess collagen on its connective tissues which makes up the skin, joints, tendons and parts of the internal organs. The is no overall cure for this disease and the earlier it is diagnosed to sooner treatment plans can be put in place to better one’s quality of life.
All of the money donated will be directly donated to the Scleroderma Foundation to assist with their research and support for the families dealing with this chronic disease every day.
The reason I am so passionate about raising awareness for this is because my mum has lived with Scleroderma for over 7 years now. It has been a long hard road for my mum and she is the most incredible woman I have ever met and the most inspiring person in my life! We are so lucky to have such a loving network of family and friends who have supported us through all our ups and downs over the years.
Mum’s Scleroderma affects her gut and she cannot ingest food through the digestive system. She is fed by liquid nutrition every night directly into her bloodstream via a PIC line (similar to an IV drip) in her arm and has not eaten food for 5 years this may!
She has been a complete trooper and got herself stabilised with her treatment plan thanks to her amazing Doctor at Royal Perth Hospital who we cannot thank enough for his support and medical advice as we don’t believe she would be here today without him.
Mum works 4 days a week now and lives mostly a normal life but she has had to make big changes to her lifestyle now to cope. Her quality of life is always at risk and there are so many other complications that come along with her gut being affected by this disease.
She has never once complained or been negative no matter how sick she has been. She has really accepted the changes in her life and hasn’t let it change her as a person and being honest – you wouldn’t know she had a terminal illness if you were walking by or if you spoke to her!