Karena's FMD story

This is Karena’s story

I'm a 44-year-old intensive care nurse. I used to live for endurance events and loved to challenge myself physically. My greatest achievement was representing Australia in 2018 at Ironman 70.3 Triathlon World Championships in South Africa.

In March 2021 my only sister Cristy Spencer died at the age of 44 following complications from an ischaemic stroke. She underwent a potentially life-saving procedure. In other words, likely to die or be permanently disabled without it, but unfortunately the intervention caused a catastrophic secondary haemorrhagic stroke, due to the degree of the initial injury. One of the doctors briefly mentioned fibromuscular dysplasia as the cause of her initial stroke. I had never heard of this disease, and we had no family history of strokes.

Several months later the nurse in me wanted to know more. I struggled to find reliable or consistent information on FMD. I found a research paper which was co-authored by Professor Jason Kovacic at the Victor Chang Cardiac Research Institute. I googled him and I found an email address. Little did I know that Jason is also the Executive Director of the Institute and highly involved in FMD research here in Australia and in New York. To my surprise, he took the time to reply and informed me that I should be tested. I was advised to see a specialist, Associate Professor Scott Wilson, at The Alfred in Melbourne.

Due to COVID restrictions I had my first appointment via telehealth. I was advised that it was unlikely I'd have FMD, but I should be checked. I also wanted to reassure my parents, and the coroner's report on my sister's case had also advised that immediate family be aware of FMD and/or get tested.

In September I had my CT angiograms, both head and body. My next appointment was in October. I could immediately see my doctor’s demeanour was different. A/Prof Wilson said: "I am happy I scanned you, but unfortunately you too have FMD." It was revealed I had already had a left carotid partial dissection. I had no idea when this may have occurred, I often had neck pain, but I did crazy things and physically pushed myself, living by the ethos ‘no pain, no gain’. I had also had two whiplashes in the past and regularly saw a chiropractor.

The CT report also confirmed FMD beading in my right carotid, cerebral arteries and right renal artery. Nearly identical to Cristy’s report. I grew up thinking we 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. I was told the disease is survivable and I'd be managed with medications and close monitoring. But telling my parents was one of the hardest things I've ever had to do, they were devastated. Thankfully I was directed to the international advocacy group Fibromuscular Dysplasia Society of America (FMDSA) to find more information and was also advised there were good Facebook support groups.

Over the next six months, I struggled to come to terms with my diagnosis.

Excuse the term, but I felt like a ticking time bomb - the only person I knew with the condition died. Unfortunately, Cristy did not know she had FMD, and as we know diagnosis and then appropriate management can reduce risks.

Her death has given me the opportunity to live, which has caused a degree of survivor guilt. I have often thought why her, why not me? Hence, I now talk a lot about FMD, and I am trying to educate others. Awareness in Australia is minimal.

Many doctors have not heard of FMD, or do not understand it. It is important to accept that doctors cannot know everything, particularly for a disease such as FMD, when we are still learning about it. We must become our own advocates and experts. The important thing is having a GP that is willing to learn with you, and to be guided by a specialist.

As women we also need to be aware of the symptoms of this disease. I believe Cristy had a 'bad headache' and neck pain in week prior to her stroke, she underplayed things like I did too.

In hindsight, I have also had headaches for over four years. Previously I would have denied ever having a migraine. But this journey has taught me otherwise and I have many migraine symptoms. Unfortunately, these symptoms can be very vague and easily attributed to other things.

It’s so important we not only recognise signs of stroke but also the symptoms of FMD, which can be migraine, as well as dizziness and high blood pressure.