Every year around Rare Disease Day (February 28th), The EveryLife Foundation hosts Rare Disease Week on Capitol Hill. The event aims to bring together the rare disease community to educate them federal legislative issues and give them the chance to...
Pfizer’s 2018 Global ASPIRE TTR Amyloidosis Competitive Grants Program
Pfizer is pleased to announce the 2018 Global ASPIRE Transthyretin (TTR) Amyloidosis Competitive Research Grant Awards for Junior Investigators. The Global ASPIRE TTR Amyloidosis program underscores Pfizer’s commitment to supporting investigators with an interest in advancing their academic research in...
Can’t Attend Rare Disease Week? Five Ways to Participate Remotely
Rare disease day is on February 28th and every year the Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases, hosts Rare Disease Week on Capitol Hill. The entire week provides a unique opportunity to raise awareness...
Amyloidosis experts from academia, industry and the FDA met last week for the Amyloidosis Research Consortium Inaugural Research Strategy Roundtable in Miami. The meeting, which brought together representatives from across the research continuum for the first time, was designed to...
Olympic Athlete Greg Foster Struggles to Find Accurate Diagnosis
At Age 57, Retired American hurdler, Olympic Silver-medalist, and 4-time world champion in the 110-meter hurdles, Greg Foster, was diagnosed with AL Amyloidosis. Below, he recounts his long journey to finding a diagnosis. In early 2016, I was diagnosed at...
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Dr. Sara Horst, Professor of Medicine in the Division of Gastroenterology, Hepatology and Nutrition at Vanderbilt University Medical Center, discussed how amyloidosis can impact the gastrointestinal tract, GI symptoms, and symptom management.
35:50 — Q&A Session
36:45 — Can Vyndamax (tafamidis) help with GI symptoms?
37:56 — Can diet affect long-term amyloid deposition?
39:37 — When should I treat constipation, and how should I treat it?
41:47 — Should I worry about cardiac side effects while using Imodium (loperamide)?
42:34 — Does Ozempic (semaglutide) affect amyloidosis?
43:33 — How do I manage low calcium or low iron?
45:22 — How do I manage gas/bloating and reflux?
47:26 — Can amyloidosis be diagnosed by GI symptoms alone?
48:25 — How do I test for SIBO or pancreatic insufficiency?
49:15 — Do you recommend probiotics?
50:14 — Should I try to find amyloid in my GI tract through medical imaging?
51:34 — How can I tell if nutrients are being digested properly?
52:32 — How do I manage alternating constipation and diarrhea?
55:46 — Is there any connection between amyloidosis and hemorrhoids?