Four years ago, Sarah Heney was used to managing £250,000 marketing budgets, mingling with the rich and famous and had built a reputation as one of the leading figures in Scottish art and tourism.
But her condition made her so ill that she had to quit the job she loved as marketing manager at the Playhouse, where she had worked for 23 years. She has since started volunteering at The MGA Academy of Performing Arts, which instructs 80 musical theatre and dance students.
It took a year-and-a-half for Sarah to be diagnosed with lupus, after the 49-year-old started displaying symptoms in early 2009.
She said: “I was misdiagnosed twice, but I wasn’t given any indication it was lupus so it did come as a shock. Not only did I not know anything about it, but it didn’t seem like anyone else did either.”
Lupus causes the immune system to turn on the patient’s body, attacking healthy cells, tissue and organs. Sarah was prescribed seven drugs, including ones primarily designed for depression, cancer and malaria to fight lupus, for which there is no specific treatment.
It has left her battling the severe side-effects of drugs designed to suppress her immune system as well as the erratic symptoms of lupus, which can include constant pain and heavy fatigue.
After taking eight months off work, Sarah, who has met countless celebrities including Brian May, Cliff Richard and Mickey Rooney in her role, attempted to return part-time but it proved too much, and she retired in January last year.
“I tried so hard and the Playhouse couldn’t have been better, it was heartbreaking,” she said.
Sarah, who lives in Liberton with husband Stewart, 67, and 14-year-old son Sam, says she is now committed to helping others with the condition, as well as the stars of tomorrow at the MGA Academy.
She said: It’s meant I’m not nearly as isolated as I could have become.”
IT MUST GO ON . .
The musical show in Sarah’s honour has been named the Butterfly and the Wolf after an original song composed by Simon Hanson about lupus.
The butterfly represents the shape of a rash many lupus patients get on their faces, while lupus means wolf in Latin.
The show takes place on March 2 at Tron Kirk in High Street, starting at 7:30pm. For ticket details, visit uk.virginmoneygiving.com/SarahHeney