ATTR-Amyloidosis.net

06/02/2026

Erin shares, "We often talk about symptoms, family history, and the broader impact of this disease. What is talked about less is what it looks like to return for evaluation year after year, especially when you are living in a space that is still being defined..." https://attr-amyloidosis.net/?p=301 hATTRNextGen

For genetic carriers, the annual examination for ATTR can be an overwhelming process. Hear how one person thinks about it, and the tools she uses to advocates for herself and her health.

05/29/2026

Thank you to ALL our community members who have come to the aid to support, encourage others in the discussion forums. is not an easy road, but it does not need to be a lonely one. See who needs your perspective today...

Learn about ATTR amyloidosis from a community of advocates who share their experiences, from diagnosis and treatment to caregiving and mental health.

05/28/2026

Faye Adams shares, "Some days it’s the bloating and stomach pain that hit after only a few bites. Other days it’s nausea that makes food sound good in theory but impossible in reality. And then there are the days when it swings from diarrhea to constipation so fast it feels like my body has forgotten what normal is..." Sound familiar? can bring on stomach issues that can completely derail the day. Read the full story here:

When you hear ATTR-CM, most people think of the heart. But what about the stomach? Hear how one person navigates the diarrhea, nausea, and pain that come along with ATTR.

05/22/2026

Looking back at who we were can leave us with a moment of grief. Faye Adams puts that experience into beautiful (and encouraging) words for those living with : "I miss her sometimes—the spontaneous, fearless version of me who didn’t have to calculate every step, every outing, every “what if.” There is a sadness in recognizing that she doesn’t fully exist anymore...

But here’s what I’m learning: she isn’t completely gone..."

Read the full story here:

An invite to a girls' trip sent a wave of realization over me.

05/21/2026

Greg Schwarz is back, this time exploring and along with his signature sense of humor. He writes, "I can’t seem to keep my foot up enough not to flop. I’m not sure why it happens. I’ve worked on trying to strengthen it, but to no avail - "Flap" still happens. So, there I go - Thump-Flap, Thump-Flap… you can hear me coming..." Read the full story here:

Greg shares his journey with hATTR hereditary amyloidosis, spinal stenosis, foot drop, and why he refuses to let a "Thump-Flap" walk stop him.

05/12/2026

There are many different types of . When do people turn to you? Erin Poyant shares what it is like for adult children of parents with ATTR.
hATTRNextGen

Adult children of parents with ATTR may find their role is undefined.

05/07/2026

Supporting your pets isn't always easy - the costs can add up. Use this resource to find ways to save on medical costs for your pet: https://attr-amyloidosis.net/?p=285

05/05/2026

What does advocating for yourself in the doctor's office look like? https://attr-amyloidosis.net/?p=171

04/28/2026

Want to write articles about your experience with ATTR? We're hiring! https://socialhealthnetwork.com/opportunity/attr-amyloidosis-contributor

04/27/2026

Do pets help cope with stress?