Advocates aim to raise awareness on World Amyloidosis Day
Spreading the word to bring faster diagnosis, better treatment
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Oct. 26 is World Amyloidosis Day, and advocates around the world are joining together to shine a light on transthyretin amyloid cardiomyopathy (ATTR-CM) and other forms of amyloidosis.
Amyloidosis refers to a group of diseases in which certain proteins fold incorrectly and form toxic clumps that damage tissue. ATTR-CM is characterized by toxic clumps of the protein transthyretin that lead to heart damage. The related condition hereditary transthyretin amyloidosis with polyneuropathy (hATTR-PN) is marked by clumps of the same protein that lead to nerve damage.
According to the Amyloidosis Alliance, there are more than 30 different types of amyloidosis. Since there are so many different forms and manifestations can vary widely, it can be difficult for doctors to diagnose amyloidosis — and further complicating matters, many healthcare professionals aren’t familiar with this rare and complex disease.
“World Amyloidosis Day exists to close that gap,” the Amyloidosis Alliance says on its website. “Every 26 October, the international community comes together with one goal: faster diagnoses and better quality treatment, through greater awareness of the disease among the general public, patients and the medical world alike.”
The alliance’s website offers a kit to help advocates raise awareness. The kit includes everything from a guide on how to organize in-person events to posts and infographics that can be shared on social media.
‘No one should have to face this disease alone’
In France, advocates will mark World Amyloidosis Day with a campaign to promote screening for ATTR-CM. The campaign will include dozens of hospitals across the country and its territories.
The Amyloidosis Foundation will host two webinars on Oct. 26: one that focuses on navigating healthcare with amyloidosis, and the other focused on making the most of clinical visits.
The foundation will hold other webinars throughout October covering topics including heart-healthy eating and making sense of heart imaging scans.
“The one truth we’ve learned through our work with the amyloidosis and ATTR-CM community is that no one should have to face this disease alone, and no one does when this community is involved,” Mandy Sandkuhler, director of partnerships and communications for The Mended Hearts, an advocacy group focused on ATTR-CM and other heart diseases group, told Amyloidosis News Today. “We are continually inspired by the determination of ATTR-CM patients and their caregivers.”
Sandkuhler said the ATTR-CM community will “ask hard questions, push for answers, then turn around and reach back to help the next person just starting that journey.”
“This World Amyloidosis Day, the best way to show support is to learn, listen, and share,” Sandkuhler said. “At Mended Hearts, we support every heart patient and caregiver, and that means making sure those living with ATTR-CM and other forms of amyloidosis know they have a place in our community too.”
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