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 diagnosed, here are a few details to help guide you along.
[ At the end of the column, there is a link to a webinar presented by the Founder and Director of the Cardiac Amyloid Clinic at the Mayo Clinic, Dr Martha Grogan, as she discusses all things wild-type. The webinar is brought to you by Amyloidosis Research Consortium (ARC)]
- Wild-type amyloidosis as a disease is being explored. Research and investigations are being done to understand and identify why some people develop it and not others. Anecdotally, active individuals such as farmers and sportspeople, particularly men, tend to be diagnosed with it.
- The organs most compromised with the amyloid deposit are the heart (cardiovascular) and progressively ligaments in the spine and carpal tunnel. Without treatment, the deposits would continue to compromise on other organs in the body, although there are incidents where the deposit does not spread.
- In NZ, once you are diagnosed with WT by your doctor, we recommend that you request to be referred to a cardiologist for further investigation. Don’t hesitate to get in touch with us for more details on who to see at “firstname.lastname@example.org.”
- Presently, there is no known cure for the disease. Progress is being made in clinical trials, and we encourage you to get in touch with us at the above email to find out more details.
- Early and prompt diagnosis is vital to ensure longevity. Although there is no targeted treatment available, symptomatic medications are available. Support from your specialist doctors and us can help you maintain a good quality of life.
- Remember that you are not alone on this journey.