Bringing ATTR amyloidosis out of the shadows

By June Shannon Heart News   |   24th May 2022

International conference on ATTR amyloidosis takes place in Donegal this weekend

A major international conference on ATTR amyloidosis, a rare condition that affects multiple organs in the body including the heart is due to take place this weekend in Donegal.

The conference ‘Emerging from the Shadows,” which takes place on Saturday the 28th of May will be attended by international medical experts and patients who will discuss ATT amyloidosis – a condition characterised by a buildup of amyloid or protein deposits in one or more organs of the body.

The conference is being organised by ATTR Amyloidosis All Ireland Support Group and the Irish Heart Foundation, and will take place on Saturday, May 28 from 10am to 4.30pm in An Chuirt Hotel, Gweedore.

One particular form of ATTR Amyloidosis is hereditary and linked with 25kms of the northwest coast of Donegal, thanks to a gene known as T60A which is prevalent there giving it the name ‘Donegal Amy’. Wild-type amyloidosis is another form of the condition.

Delays in diagnosing amyloidosis are common because the symptoms can be confused with numerous other conditions.

People living with ATTR amyloidosis can suffer from a wide range of symptoms including, feeling weak or tired, unexplained weight loss, swelling in the legs, ankles or feet, breathlessness, numbness, pain or tingling in their hands or feet, bowel or bladder issues or difficulty in walking.

“Our theme reflects a rising awareness of the condition and the emergence of new treatments, of which there were none until a few years ago,"

Rosaline Callaghan , ATTR Amyloidosis All Ireland Support Group

Rosaline Callaghan of ATTR Amyloidosis All Ireland Support Group emphasised the international scope of the conference, which will address healthcare professionals and patients on early diagnosis and new treatments for ATTR amyloidosis.

“Speakers include world-renowned experts Professor Julian Gillmore and Professor Mary Reilly, and leading professionals in the field from both Northern Ireland and the Republic of Ireland,” she said.

“Our theme reflects a rising awareness of the condition and the emergence of new treatments, of which there were none until a few years ago. We need to raise more awareness – my condition of hereditary amyloidosis Thr60ala, is not only rare, it is all the more unusual in that it has a geographically specific origin in North-West Donegal.

“One medical paper suggests that 1 per cent of the population of that county may carry the faulty gene. Of course, not everyone who carries the gene goes on to develop the condition, but many do. ATTR amyloidosis is rapidly progressive, and ultimately fatal without treatment. We need to ensure people can get a speedy diagnosis and access to treatment at the earliest opportunity,” Ms Callaghan added.

Professor Emer Joyce, Consultant Heart Function and Transplant Cardiologist, at the Mater University Hospital in Dublin and Clinical Professor of Medicine at University College Dublin (UCD) who will address the conference on how amyloidosis affects the heart said, “Cardiac amyloidosis, and specifically, ATTR-CA affects a growing population of patients encountered in our clinical practice.”

“With the advent of contemporary non-invasive imaging techniques, diagnostics in this field have substantially improved, allowing an earlier detection of affected individuals.

“This, alongside the emergence of effective specific therapies for ATTR-CA, is expected to translate into improved outcomes, making possible a promising future for amyloid patients. It is hoped that with dedicated funding and national support and coordination, Ireland can be a future leader in ATTR amyloidosis care and best practice.”

" It is hoped that with dedicated funding and national support and coordination, Ireland can be a future leader in ATTR amyloidosis care"

Professor Emer Joyce, Consultant Heart Function and Transplant Cardiologist, Mater University Hospital

Professor Sinead Murphy, Consultant Neurologist at Tallaght University Hospital, will speak on the impact of ATTR amyloidosis on the autonomic nervous system, and Professor Mary Reilly, Consultant Neurologist with Queens University College in Belfast will discuss the peripheral nervous system.

Dr Sinead Hughes, Consultant Cardiologist with Altnagelvin Hospital in Derry will address the conference on the history of the T60A gene while Professor Aisling Ryan, Consultant Neurologist with University College Hospital, Cork will cover H90D; the second most common mutation of hereditary amyloidosis in Ireland.

Dr Mark Coyne, Consultant Haematologist in Belfast will highlight the pathways to genetic testing for hereditary amyloidosis, while Professor Julian Gilmore, Head of the National Amyloidosis Centre with UCL London, will discuss a new world of treatments for ATTR amyloidosis.

Attendees will also hear from Mr Carlos Heras-Palou, Sandra Campbell and Jean Christophe Fidalgo on a range of ATTR Amyloidosis partnerships and alliances.

The conference is supported by Alnylam Pharmaceuticals, Bridgebio, Intellia Therapeutics, Pfizer and Sobi.

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amyloidosis ATTR amyloidosis conference heart heart disease medical professionals rare disease

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