From Frustration to Advocacy: Our Hereditary ATTR Amyloidosis Story
My father passed a lot down to me. Those of us living with genetic risks might pass things down to our children too. I want to pass down the same kind of legacy my father gave me. Not just awareness, but connection. Not just risk, but action.
Training the Next Generation of Amyloidosis Specialists
While the amyloidosis community continues to grow, there are simply not enough trained experts to meet the needs of patients. As awareness increases and diagnostic tools improve, more people are being identified with the disease. But access to specialized care is still challenging.
A Smarter Way to Explore Amyloidosis Care: Meet MAP
An amyloidosis diagnosis brings a rush of questions. Where should I go? Who truly understands this disease? Are there clinical trials for someone like me? For too many patients and caregivers, these questions can feel overwhelming, and the path forward can seem unclear. That’s why ARC designed My Amyloidosis Pathfinder ...
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Dr. Melissa Hershman joined ARC to discuss how amyloidosis may be affecting your gut, and what you can do about it. There was also an opportunity for questions and answers.
Original Presentation Date:
March 18, 2026
0:00 — Welcome
3:58 — Introduction
5:15 — Epidemiology of GI Involvement in Amyloidosis
7:16 — How GI Symptoms Present in Amyloidosis
9:08 — Amyloidosis Overview
11:28 — Main Mechinisms for GI Involvement
13:40 — Mucosal Involvement
15:26 — Vascular Involvement
17:52 — Neuromuscular Involvement
19:14 — Testing Overview
22:21 — GI Symptoms in Amyloidosis
32:37 — Small Intestinal Bacterial Overgrowth (SIBO)
34:49 — Treatment Overview
36:20 — GERD (refulx)
40:11 — Gastroparesis & Nausea
46:10 — Diarrhea
49:53 — SIBO
51:00 — Constipation
52:37 — Pelvic Floor Dysfunction
53:49 — Abdominal Cramping
54:42 — Q&A Session
54:54 — How strong is the evidence for accupuncture for helping with GI symptoms?
55:35 — Can probiotics help with gut management?
56:59 — Are there treatments for fecal incontinence?
58:04 — Is my dry mouth, stomach cramping, and constipation normal or a side effect of my medication?
58:49 — My gastroenterologist isn’t familiar with amyloidosis. How can I help them?
1:00:02 — How do I distinguish between amyloidosis symptoms and side effects of taking Ozempic (semaglutide)?
1:01:07 — When should I see a gastroenterologist? Is it beneficial to also work with a dietitian?
1:03:00 — What is gastroparesis? How does it affect the body?