My Amyloidosis Story

My name is Luigi, but to my childhood friends I’ve always been Luigino. That nickname takes me back to carefree days. In March, I celebrated my 85th birthday, and until then, I had always felt invincible. The bicycle had been my lifelong companion. I would cycle for kilometers—sometimes even 100 km in a single day—imagining myself as Coppi or Bartali, sprinting endlessly toward the finish line. It was my freedom, my way of facing life: always moving, never stopping.

My work also took me far from home, and I was lucky enough to travel a lot. I visited many countries and cities, met new cultures and people, and every journey felt like a new stage of my life. But every return home reminded me that my true starting point and destination was always here, with my family.

Then, shortly after my birthday, everything changed. My hands began to feel strange, as if wrapped in wet gloves. I tried to ignore it, hoping it would pass, but soon my legs also began to fail me. My worry grew, and I decided to go to my cardiologist. After a series of tests, the diagnosis came—clear and devastating: wild-type cardiac amyloidosis.

For those who don’t know, amyloidosis is a rare disease caused by the accumulation of an abnormal protein (amyloid) that deposits in organs and damages them. In my case, it affected my heart, making every heartbeat more difficult and tiring. The symptoms are subtle and common: sudden weight loss, shortness of breath, carpal tunnel… symptoms that could easily be mistaken for normal signs of aging. That is why this disease is so hard to diagnose, and often discovered too late. This is why early diagnosis is essential, to stop or at least slow the progression as much as possible.

I am now being treated with Tafamidis, a medication that only slows the progression of the disease—it does not stop it. Each box of 30 tablets costs over €22,000, an enormous amount. Luckily, in Italy it is covered by the national health system, but the cost remains a constant reminder of how difficult and expensive this battle is. Scientific research is moving forward to find better treatments and, one day, maybe even a definitive cure. The road is long, but it is a cause we must support, because no one should face this disease without hope.

Through all of this, one thing keeps me standing: my family. Without the constant support of my wife and my daughter, I don’t know how I would have made it. My wife is my rock, the partner of all my rides in life. Even when I was discouraged or afraid, she never lost her calm. With her gentleness, she reminds me every day that I am not alone in this fight. Not a day goes by without her by my side, ready to encourage me and to lift me up in my darkest moments.

And then there is my daughter, my practical support—the one who fights for me when bureaucracy feels impossible. She is doing everything she can to help me obtain disability benefits and a wheelchair. She has never given up. I see in her the same determination I have always had, and her presence gives me strength. Thanks to them, I never feel truly defeated.
Luigino never gives up.

Every day in this rehabilitation facility is a new challenge, but they are always beside me, ready to push me forward. Even when I feel like I’m riding uphill, like in those endless cycling climbs, I know that with them, I can make it.

When I contacted FAMY Onlus, I did it because this illness is a battle you cannot fight alone. I found comfort in knowing that there are others who truly understand what it means to face amyloidosis.

Every day I wake up hoping for something to improve. And even though I can’t ride my bike anymore, I can still feel the wind brushing my face—a memory that never leaves me. Life changes, but my determination and my family remain. I will never give up, because I still have many races left to run, even if only in my heart.

We cannot stop the rain, but we can learn to ride through it, finding joy even in difficult moments.

And so, together, we keep pedaling.

Like on a tandem, we face life’s climbs, drawing strength from one another as we push through every uphill road.