May 18 2021 33 mins
Vince Nicholas and Paul Pozzo are patient advocacy leaders at the UK ATTR amyloidosis Patient Association. Each live with a variant of the rare disease amyloidosis; ATTR (transthyretin) amyloidosis and wild-type amyloidosis, respectively.
In this podcast they talk to us about their patient journey and their experiences as both patients and patient advocacy leaders.
Amyloidosis is a protein disorder in which proteins change shape, then bind together and form amyloid fibrils which deposit in organs.
As amyloid fibrils build up, the tissues and organs may not work as well as they should. Amyloidosis is a long term (chronic) disease. The severity of the disease depends on which organs are affected which can be the heart, blood, or liver,which may necessitate a liver transplant.
Vince and Paul discuss how educating the wider population on the symptoms of amyloidosis, ensuring an early diagnosis, is THE key to managing the disease before it becomes too advanced.