Kildare based Senator Fiona O’Loughlin has marked the first ever World Amyloidosis Day today, the 26th of October 2021. The objective for the first ever World Amyloidosis Day, organized by Amyloidosis Alliance and patient organisations from 18 different countries, spanning 4 continents, is to alert the world to the diagnostic delay that patients face, which averages 4 years.
Senator O’Loughlin said “I think we all have a heightened awareness of Amyloidosis in South Kildare, as a result of the advocacy of our local friend Pat Tinsley, who has suffered with the disease for some time and has bravely sought to raise awareness of the disease”
“The purpose of World Amyloidosis Day is to raise awareness of this rare disease. Unfortunately, according to the Amyloidosis Alliance, ‘there are no unifying symptoms that are common to all forms of amyloidosis. It is a rare, complex and multifaceted disease. The different forms of amyloidosis are very different illnesses, they are caused by an abnormal build-up of proteins in the body, that meld into plates that clump together and affect some organs negatively – generally the heart, the kidneys and the peripheral nervous system’. This means that a heightened awareness of the disease is crucial to ensure that sufferers are correctly diagnosed and treated as quickly as possible.”
“On average, it is taking 4 years for a sufferer of amyloidosis to be diagnosed. Late diagnosis of the disease is a major risk as the progress of the disease may prove irreversible and in some cases it can be deadly. Heightened awareness of this disease is vital for early detection and treatment”
Fiona concluded “I have long advocated for sufferers of this disease, including for our local friend Pat Tinsley- and I am pleased that as a result of our advocacy, Patisiran, a lifesaving drug which can help treat Amyloidosis is now available through the HSE. But we need to ensure that people are being correctly diagnosed as early as possible so that this drug can be accessed, and its impact on patients is maximised.”