Nurse on mission to raise awareness about fibromuscular dysplasia disease after losing sister

A Bendigo nurse is on a mission to raise awareness of fibromuscular dysplasia (FMD) after losing her only sister to the rare disease and receiving her own life-changing diagnosis.

Former triathlete Karena Spencer can no longer train or compete and feels like "a ticking time bomb" since she was also diagnosed with FMD. 

FMD is a vascular disease that causes abnormalities in the arteries of the body and is linked to stroke and heart attacks.

In 2021, Ms Spencer lost her 44-year-old sister Cristy following complications from a stroke, which was later discovered to be linked to FMD.

"Cristy was a very community-minded person in Melbourne working from home on her own during COVID when it happened," she said. 

"Days before, she was complaining of a headache but, like most 44-year-olds, she thought she would be right and didn't think she was having a stroke.

"Unfortunately that night she did have a stroke and wasn't found for some time."

Women more likely to develop FMD

FMD is 10 times more likely to occur in women than men aged between 40 and 60.

Ms Spencer had never heard of FMD and her family had no history of strokes. 

Determined to honour her sister, the intensive care nurse started researching FMD and got in touch with the Victor Chang Cardiac Research Institute, which recommended she also get tested for the disease. 

"I was advised to see Associate Professor Scott Wilson at The Alfred hospital who tested me straight away to find that I too had FMD," she said. 

"The CT report also confirmed FMD beading in my right carotid, cerebral arteries and right renal artery, nearly identical to Cristy's report."

two sisters with brown hair, looking — Cristy Spencer [L], pictured with her sister Karena, died as a result of FMD during 2021. (Supplied)

Now also 44 years old, Ms Spencer is on medication to manage the risks.

"The doctors told me that earlier diagnosis greatly reduces risks and is survivable," she said. 

"I am on lifelong aspirin and blood pressure medication to minimise risks."

Enforced lifestyle change

Ms Spencer said she grew up thinking her and her sister were "so different, complete opposites in many ways".

"I was athletic; she was petite. I had olive skin; she had a pale complexion, but you cannot escape genetics."

Ms Spencer, who used to live for endurance events, said she had to drastically change her lifestyle and hobbies so she did not get her heart rate up.

"As a person who has represented Australia in triathlons, it took a long time to come to terms with my FMD diagnosis, especially telling my parents," she said.

"[That] was the hardest thing I have ever had to do in my life."  

Pushing for awareness

Instead of training for triathlons, she has turned her passion to raising awareness about the disease.

"The more I researched, the more I learnt that many doctors don't know a lot about FMD, so I am now trying to educate others as I try and live my new normal life," Ms Spencer said.

Bendigo Health Cardiology Department head of unit Dr Voltaire Nadurata said it was important, particularly for women, to recognise the symptoms.

"It is important particularly in the younger and middle-aged female population to not simply ignore the symptoms that may point to a heart attack," he said. 

"Symptoms of a heart attack may not always be severe and, in fact, could be very subtle, particularly in females, so it is important that if you feel that there may be something not quite right, to ask for assistance."

Signs can include shortness of breath, fatigue, feeling dizzy, and pain in the left arm.

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