Leo’s Story – Living with ATTR Wild-Type Amyloidosis

Hi, my name is Leo and I am living with ATTR wild-type amyloidosis. It is a rare disease where abnormal proteins called amyloid build up in organs and tissues, affecting how they function. In my case it has affected my heart and the nerves in my carpal tunnels in both wrists. It has also affected my breathing when active.

My amyloidosis journey started in early 2023 when I arrived back in Australia after an overseas holiday. As it turned out, I recommend never having a massage in a foreign land, as the result for me was a lower disc protrusion requiring surgical intervention. On a positive note, it did eventually diagnose and reveal my disease.

A referral by my family doctor to a spinal surgeon resulted in the surgeon not wanting to go ahead with surgery unless a cardiologist determined it to be safe. Following this advice, I consulted a private cardiologist who sent me for different tests, including a cardiac MRI. That cardiologist then referred me to the amyloidosis clinic at Westmead Hospital. After several tests I was diagnosed with ATTR wild-type amyloidosis in February 2024, around seven months later.

The spinal surgery never went ahead as it was deemed too risky to be put under a general anaesthetic. I have since had an emergency procedure in hospital where three anaesthetists were present just in case. Thankfully, I had no problems waking up.

My condition has also affected my carpal tunnels, especially my left wrist, for which I had a procedure to release the nerve from being squashed. Although nerve testing showed carpal tunnel syndrome in both wrists, my right wrist does not give me any trouble.

I am 79 years of age and have been retired for many years, which means I am in charge of what, where and how much I do. My favourite pastime is practicing and mentoring Public Speaking (effective communication) and Leadership opportunities to others, especially young professionals and at high school colleges. My girls have their own grown-up families, and time with our grandchildren and children is always a treat. My wife is fully informed and supportive, as is my family doctor, who was inexperienced with this condition to begin with. The condition, and the medication I was prescribed (tafamidis) was also new to my pharmacist.

Science has identified many different proteins that misfold, meaning there are different types of amyloidosis which require different treatments. My disease stems from my liver, and I feel blessed that it is one of the easier ones to treat. There is a lot of research going on around the world, with trials being completed and new medications developed

I would like to pass on my thoughts to anyone with unidentified symptoms: never give up, and seek other opinions. Any person knows their body best, so don’t give up until a proper diagnosis has been found. Early diagnosis is the key to reducing advancement of the disease.

I have sought out opportunities to educate myself and connect with others living with amyloidosis. Learning from credible sources, hearing other people’s stories and having support available makes a real difference. I encourage others to seek out support. Always be grateful for each day.