hATTR-PN

By the time this column is published, I will be halfway across the world, traveling to Heidelberg, Germany, for the International Symposium on Amyloidosis. It will be the first time I attend an international amyloidosis conference as a patient advocate leader without my husband alongside me. Sadly, Aubrey…

The newly approved familial amyloid polyneuropathy (FAP) treatment Amvuttra (vutrisiran) is being offered at UC San Diego Health to help mitigate symptoms resulting from the nerve damage that marks the progressive disorder. According to UC San Diego Health, it’s the nation’s first health system to offer the treatment to…

In my columns, I share my experience as a caregiver to a spouse who suffered from hereditary ATTR amyloidosis. Whenever I sit down at my desk to write, I say a little prayer that my stories will comfort readers, no matter the topic. I hope that others feel…

Long-term treatment with Tegsedi (inotersen) reduced pain and improved physical functioning and health-related quality of life in patients with familial amyloid polyneuropathy (FAP). That’s according to an analysis of data from the Phase 3 NEURO-TTR trial (NCT01737398) and its open-label extension (OLE) study (NCT02175004).

After I finish writing this column, I will meet a few friends for dinner. But socializing without my husband beside me still feels foreign. Mary-Frances O’Connor, an associate professor of psychology at the University of Arizona, describes the grieving process as a way of learning how to be…

A diagnosis of familial amyloid polyneuropathy (FAP) due to a mutation in the TTR gene was made in an older man from China, a country where the disease is not regularly found. The mutation, called Val30Met, is the most common cause of FAP in regions of the…

It has been very encouraging to witness treatment advancements that target ATTR amyloidosis. Although a cure is not currently available, pharmaceutical research shows promise in the development of drugs to slow the progression of amyloid deposits, which causes the disease. ATTR amyloidosis affects multiple organs in the…

Larger studies are needed to back the use of nailfold capillaroscopy — a non-invasive technique for imaging tiny blood vessels in the fingers — for the early detection of familial amyloid polyneuropathy (FAP), a new report says. Nailfold capillaroscopy, known as NFC, allows researchers to image blood vessels…

Alnylam Pharmaceuticals has selected Orsini Specialty Pharmacy to distribute Amvuttra (vutrisiran), which was recently approved by the U.S. Food and Drug Administration (FDA) to treat familial amyloid polyneuropathy (FAP). “We are honored to work with Alnylam in providing access to this important treatment option or medication for…

I recently watched a documentary narrated by British naturalist David Attenborough about how climate change and deforestation negatively affect animal life on our planet. One clip featured walruses stranded on top of a cliff in the Arctic. Unaware of how high they are and confused by…