Kate’s Story

It was a strange sensation; a distinct but not painful feeling in my left eye which lasted for a few minutes. I didn’t think much of it until I realised that I couldn’t see my husband standing right beside me. That was the day my new life started.

I have fibromuscular dysplasia (FMD) which is a rare disease that causes abnormal narrowing and enlargement of one or more arteries. Mine, as you may have guessed from my symptoms, started in my carotid arteries leading to my brain. I have also recently been diagnosed with FMD in my left renal and left external iliac arteries. Many people have FMD in arteries leading to the kidneys, and it is also common in the vertebral and abdominal arteries. It is less common in the extremities (arms and legs).

The symptoms depend on the arteries affected and whether there is narrowing, tears or aneurysms within them. My symptoms are transient ischemic attacks (TIAs) which are often called mini-strokes. They led to my diagnosis eight years ago, which was temporary loss of peripheral vision in my left eye. People with carotid FMD have a higher risk for aneurysms of the arteries in the brain and bleeding in the brain. Many people with renal FMD have specific symptoms like high blood pressure although, I am blessed and don’t have any new symptoms associated with my new diagnosis.

I also experience pulsatile tinnitus (a constant swooshing sound in the ears) which is extremely annoying but thankfully, not painful. Due to the lack of funding for research into FMD there are limitations around what is known about the disease. Many FMD’ers experience a vast array of other symptoms that have not yet been scientifically associated with FMD and, therefore, are often dismissed by healthcare professionals.

What is known though is that FMD is often painful, it can be life-threatening and it is mostly diagnosed in middle aged women, although men and children can be affected too. The causes are not yet known but there is some suggestion of a genetic or hormonal cause and there is no cure. We manage our symptoms the best we can with high blood pressure, headache and antiplatelet medications and procedures such as balloon angioplasty and open surgery if required.

I am extremely blessed; my disease is quite stable and well managed at this point. I live a full life of limited pain, some discomfort and am capable of engaging in physical activity which is key to my wellbeing… especially yoga and bushwalking. I work hard to keep my stress levels to a minimum; I eat well and do what I can to keep my body and mind healthy. I truly believe these things have had a positive impact on the disease and how it manifests in my body.

The impacts of COVID-19 across the globe have been catastrophic, especially for vulnerable people and those with pre-existing conditions. Specialists have advised that the vaccines are safe for those living with FMD for which I am extremely grateful, and I am looking forward to a time when our community can safely gather face-to-face.

Like the rest of the rare disease community, I would love to see more funding to support research into FMD and other rare diseases.