I’ve moved! It’s exciting, but the move was daunting because of the sheer amount of work that went into clearing out items from a place where my children grew up from 2007 onward. This place was our family home, housing much laughter, tears, and peace. History seeps through the walls,…
hATTR-PN
My mother-in-law, who has familial amyloid polyneuropathy (FAP), often experiences tingling and burning sensations as well as pain in her hands and feet. Because of that, she must keep them covered at all times. This is the reality of peripheral neuropathy. She also experiences other symptoms that…
Running a genetic screening may help to diagnose familial amyloid polyneuropathy (FAP) among people with sensory-motor polyneuropathy — damage to many nerves involved in sensations and motor skills — and at least two symptoms suggestive of FAP. That’s according to a study in Italy that identified FAP in 10%…
New 15-year data from a global study involving more than 6,000 people with ATTR amyloidosis, an umbrella term for conditions that include familial amyloid polyneuropathy (FAP), found that nearly 1 in 4 patients experience both neurological and cardiac symptoms, showing the need, according to researchers, for improved multidisciplinary…
Diagnostic tests outside those considered standard for familial amyloid polyneuropathy (FAP) detected FAP in 12 of 38 people who carried disease-causing mutations but were asymptomatic, or without evident FAP symptoms, a study reported. The assessment methods, which identified FAP features when standard tests did not, included modified nerve…
Starting in late November and often lasting through March, the cold weather in much of the U.S. can be a burden for many patients with familial amyloid polyneuropathy (FAP). Those living on the East Coast or in the Midwest often face especially brutal winters. My mother-in-law’s FAP symptoms require…
A few months ago, I learned something new about my wife’s side of the family as we celebrated Thanksgiving. My mother-in-law suffers from familial amyloid polyneuropathy (FAP), which I already knew. But my wife’s grandmother told me that three of her own siblings had also been diagnosed with…
A few weeks after its approval in the U.S., Wainua (eplontersen) will now be available to adults with familial amyloid polyneuropathy (FAP). Orsini was selected as the exclusive specialty pharmacy partner to provide Wainua, which was co-developed by Ionis Pharmaceuticals and AstraZeneca. The medication will also be made available through integrated…
The U.S. Food and Drug Administration (FDA) has approved eplontersen for treating familial amyloid polyneuropathy (FAP). The therapy, which will be sold under the brand name Wainua by its co-developers Ionis Pharmaceuticals and AstraZeneca, is specifically indicated for adults with the genetic disease. In a previous Phase…
A little more than a year of treatment with eplontersen was found to stabilize or even improve the heart’s structure and function in people with familial amyloid polyneuropathy (FAP) who also were experiencing symptoms of heart disease, known as cardiomyopathy. That’s according to an exploratory analysis of data…
Recent Posts
- A look at the emotional and psychological effects of diagnosis
- ATTR amyloidosis cases on the rise in the US as diagnostics improve
- Nerve ultrasound able to spot silent damage in hATTR, study finds
- Heart rhythm problems common in adults with FAP-causing mutation
- The emotional burden of receiving negative genetic test results