PASSIONATE CARERS: Jeanette DeFries and her daughter Jasmine are raising awareness of the little-known disease sarcoidosis, after watching their daughter and sister struggle with the disease.
IMAGINE being in so much pain your young children can’t even hug you.
Some days, that is what one young woman faces.
Sarcoidosis, or sarc as it’s known by sufferers, can affect any organ in the body.
It is painful and its impact on the heart and brain can lead to fatal complications.
There is no known cause and no cure. It’s estimated 2500 Australians are living with sarc.
Virtually overnight, Jeanette DeFries’ daughter, who did not want to be named, went from being a healthy young woman with two small children to a world of crippling pain.
In February last year the young woman became sick, suffering chronic chest pain and fatigue.
A CT scan revealed tumours known as granulomases on the outside of her heart and lungs. Eventually she was diagnosed with sarcoidosis.
“We were devastated, nobody knew anything about it or how to treat it,” Mrs DeFries said.
“There are only two specialists in Australia so we had to go to Brisbane to see one of them.
“Most people’s bodies use cells to isolate and destroy harmful substances.
“Inflammation occurs during this process and normally once the harmful substance is gone, the cells and inflammation go away.
“In people with sarc the inflammation doesn’t go away,” Mrs DeFries said.
The young woman now undergoes chemotherapy every week to little effect.
The disease has now spread to her heart, lungs, liver, skin and also affects her brain. She suffered a mild stroke before Christmas.
“We take it each day at a time; there are good days and bad days. She tries to stay positive,” Mrs DeFries said.
“She said it was more painful than giving birth to a child. There are days when she is in so much pain she can’t put her feet on the ground and her children can’t cuddle her.
“We need to raise awareness and we need to find a cure, these people suffer incredibly.”
A number of events have been planned this year to raise awareness and funds for research into the disease.
A target of $30,000 has been set with a long-term goal of $200,000 to enable research to begin.
Events planned include a masquerade ball at Huskisson RSL club on Saturday, June 29.
A golf day is also planned with the chance to win a new car. The golf day will be held at Vincentia Golf Club on a date to be advised.
For more information about these events phone Jeanette DeFries on 0407 848379.