We have seen a rise in the diagnosis of people with wild-type (WT) amyloidosis globally and New Zealand. If you are reading this and newly
Category: INFO
How To Be Heard At The Doctors; Patient Voice Matters
The effectiveness of in-clinic, or virtually these days, visits to your doctor rests in your ability as a patient to make your doctor LISTEN and
CRISPR/Cas9 Genome Editing Technology
HOW CRISPR/ Cas9 Works Video “CRISPR/Cas9 genome editing can make permanent, precisely targeted changes in patients’ chromosomes and repair the underlying genetic mutation, whereas more traditional
How Pacemaker Can Contribute to Hypotension and Pedal Edema
“Pacemaker syndrome” is something which implanted patients (normally diagnosed with cardiomyopathy) should be made aware of. Speaking from experience, implanted patients are not often advised
Genetic Discrimination: Insurance Policies
As a patient association, an important aspect of our advocacy work is to encourage those with a known history of family members carrying the
Gene Editing; A Promising Hope For Amyloidosis Patients If Proven A Success
Genetic engineering technology by itself is nothing new and have been around since the 1970s. Fast forward to 2020, the technology has now evolved and
Part 2:The A to Z on Amyloidosis (Heart, Nerves, Nervous System, Ocular, Latest Technology, Therapy)
(Amyloidosis Support Group, October 2019, Conference Notes) Heart Our heart consists of millions of muscle cells making it beat. Amyloid gets between the cells, making
Part 1 The A to Z on Amyloidosis (Terms, Diagnosis, Types, Treatment, Genetic & Gut)
(Amyloidosis Support Group, October 2019, Conference Notes) Diagnosis Terms Amyloidosis = Protein folding disorder TTR = transthyretin: Transports thyroxine (a thyroid hormone) and retinol (vitamin