Category: Patients

By: Isabelle Lousada, CEO & Founder, Amyloidosis Research Consortium (ARC)

Thirty years ago, 1995, was the biggest year of my life. I completed my master’s in architecture. I met and married my husband. And I was diagnosed with amyloidosis.

It was, as Dickens wrote, “the best of times, the worst of times.”

Some moments remain sharp no matter how much time passes. I remember collapsing while shopping for my wedding dress. I remember my new brother-in-law, a cardiologist, noticing my pain during our wedding celebration and urging further tests. Within days, the joy of starting married life had been replaced with the fear of life-threatening illness.

The word amyloidosis was foreign to me. I had never heard of it, but suddenly it was the defining word of my future. For nearly a decade, my health had been declining in ways that were hard to explain, leading to dead ends and misdiagnoses. Finally, a gastroenterologist who suspected something more, and a fortunate coincidence of family background, led to a biopsy that lit up under a Congo red stain: amyloidosis.

A definitive diagnosis came in December 1995: AL amyloidosis, with extensive organ involvement. Without treatment, doctors said I had months, not years. We abandoned plans to buy a house and instead found ourselves in a small Boston apartment, while I spent months in the hospital at Boston Medical Center.

A first treatment failed. Hospice was discussed. And then, one last hope: an experimental stem cell transplant. It was grueling. Months of complications left me frail and weak. But slowly, piece by piece, I recovered. The transplant had wiped out the faulty cells, and my organs gradually healed.

That experience changed my life.

The pain of diagnosis delays, the challenge of accessing specialized care, and the decades-long wait for new treatments all showed me one thing: if the amyloidosis community did not fight for progress, no one would.

Ten years ago, after the first therapy for amyloidosis was rejected by the FDA, I founded the Amyloidosis Research Consortium (ARC). My vision was to harness collaboration and accelerate progress in ways no single organization could. Today, thanks to the dedication of patients, families, researchers, and partners, we are driving research, elevating patient voices, and pushing forward treatments that once felt unimaginable.

This is a unique moment. For the first time, we have multiple approved therapies. Clinical trials are reshaping the future. Patients are being diagnosed earlier. But the work is far from done — and the next breakthroughs will only happen if we continue together.

I share my story not only because it shaped who I am, but because it reflects the experience of so many in our community: the long road to diagnosis, the fight for treatment, the determination to turn personal hardship into collective progress.

ARC’s first decade was about proving what is possible. The next decade must be about finishing the job.