Amyloidosis UK

Your Word of the Day is: DPD Scan. A diagnostic technique that shows if abnormal protein (amyloid) has built up in the heart. Before the scan, a small amount of a radioactive substance (containing DPD, a radioactive “tracer”) is injected into the blood. The substance sticks to amyloid deposits, and a scanner takes pictures that show where the protein has collected.

Your Word of the Day is…

DPD Scan

A diagnostic technique that shows if amyloid has built up in the heart. Before the scan, a small amount of a radioactive substance is injected into the blood that sticks to amyloid deposits & a scanner takes pictures that show where the protein has collected.

This is one of a series of videos created and funded by AstraZeneca UK. They have been provided to Amyloidosis UK for use on Amyloidosis UK's owned channels only.

What are the common myths about ATTR amyloidosis? YouTube video by Amyloidosis UK

What are the common myths about ATTR amyloidosis?

In this video Christine Chiti (Clinical TTR nurse specialist at the National Amyloidosis Centre) outlines some of the common myths & misconceptions about ATTR #amyloidosis, eg that you shouldn’t eat protein or go on holiday.

youtu.be/ojsPmoAy6Xs

Serum pTau levels are not specific to Alzheimer's disease and may also serve as diagnostic tool for other types of systemic amyloidosis, with potential utility in distinguishing amyloidosis-related polyneuropathy from other etiologies Mathias Jucker https://www.nature.com/articles/s41591-026-04272-2

Your Word of the Day is Free Light Chains (FLC). Light chains are part of the structure of antibodies which play an important role in the body’s defence against infection. They are produced in the bone marrow by a type of white blood cell called plasma cells. In AL amyloidosis, abnormal plasma cells grow and multiply, and make excessive amounts of abnormal free light chains. Instead of forming antibodies, these faulty light chains become misfolded and form amyloid deposits in various organs.

Your Word of the Day is…

Free Light Chains

Produced in the bone marrow by plasma cells, light chains are part of the structure of antibodies which play an important role in defending against infection. In AL amyloidosis, abnormal plasma cells cause excessive amounts of abnormal light chains.

Welcome! You are invited to join a webinar: GHH Empower: Dealing with Dismissal . After registering, you will receive a confirmation email about joining the webinar. Being dismissed or unheard in a healthcare setting can have a significant impact on both health outcomes and emotional wellbeing. Many individuals experience their symptoms being minimised or their co...

Join @globalhearthub.bsky.social—in partnership with their Affiliate Heart Sistas—for a free focused session that explores what healthcare dismissal looks like, why it happens and how you can respond before, during and after it occurs.

Webinar April 2. Register here:
us02web.zoom.us/webinar/regi...

Your Word of the Day is Tetramer Stabilisers. Used to treat ATTR amyloidosis, these are small molecule medicines that help keep the transthyretin (TTR) protein from breaking apart. The TTR protein is made up of four units joined together. In the abnormal or diseased form, the protein is unstable and prone to breaking apart into its four units. The individual units misfold and form amyloidosis. Stabilisers like tafamidis & acoramidis bind to the TTR protein, for a period of time stopping it from breaking up, thereby reducing or slowing down the formation of amyloid deposits.

Your Word of the Day is…

Tetramer Stabilisers

Used to treat ATTR amyloidosis, these medicines help keep the transthyretin (TTR) protein from breaking apart. Stabilisers bind to the TTR protein, stop it from breaking up for a period of time, thereby slowing down the formation of amyloid deposits.

Another interesting development: this study provides further evidence that suggests the same biomarkers for Alzheimer's disease may also be indicative of ATTR and AL amyloidosis and could even be used as a diagnostic tool for all of these conditions.

Your Word of the Day is Serum amyloid P component (SAP). SAP is a normal blood protein, present in everybody. In healthy people there are very small quantities of SAP, and it is only present inside the bloodstream, but not in the organs. In the bodies of patients with amyloidosis, in addition to the small quantities of SAP in the blood, there are large quantities of SAP coating the amyloid deposits in the organs. In an SAP scan, all of this coating shows up clearly, as if it has been highlighted, or labelled.

Your Word of the Day is…

Serum amyloid P component (SAP)

…a normal blood protein, present in everybody. In a healthy body’s bloodstream there are very small quantities of SAP present, but not in the organs. With amyloidosis, a body also has large amounts of SAP coating amyloid deposits in organs.

Open Access UCL Research: Prognostic Factors and Progression Biomarkers in AL Amyloidosis: Mapping Current Knowledge and Critical Gaps
discovery.ucl.ac.uk/id/eprint/10...

How to talk to others about a diagnosis of ATTR amyloidosis YouTube video by Amyloidosis UK

Christine Chiti is a Clinical TTR nurse specialist at the National Amyloidosis Centre in London. In this video she outlines the challenges around telling other people about your ATTR amyloidosis diagnosis and how to overcome them.

youtu.be/ZZrLw5sK9ac

Your Word of the Day is Serum Amyloid A (SAA). SAA is a protein normally found in the blood in low concentrations, but production is ramped up when there is inflammation in the body, along with other chemicals & molecules that help deal with infections or other internal threats. AA amyloidosis develops when a person has a medical condition or other disorder that causes sustained inflammation in the body creating abnormal levels of SAA that lead to the formation of amyloid deposits.

Your Word of the Day is…

Serum Amyloid A (SAA)

SAA is a protein normally found in the blood in low concentrations, but production is ramped up when there’s inflammation in the body. In AA amyloidosis, sustained bodily inflammation causes abnormal levels of SAA that lead to amyloid deposits forming

In Loving memory of Our Mum Sue Help Kate Makin raise money to support Amyloidosis UK

We’d like to thank Kate Makin who has so far raised £1,550 for our charity in memory of her mum Sue, who sadly passed away from amyloidosis last year.

”Our mum was an incredibly kind, strong, and caring person, and she meant so much to us and to so many others.”

www.justgiving.com/page/kate-ma...

Your Word of the Day is Gelsolin. Gelsolin is a protein made in the muscles and plays an important role in the structure of cells that make up the different tissues in the body. It also plays a part in wound healing. In AGel amyloidosis a genetic mutation in the gelsolin gene results in abnormal gelsolin which forms amyloid deposits. This most commonly affects the nerves, eyes and skin; in some patients the kidneys, heart and bowel can also be affected.

Your Word of the Day is…

Gelsolin

Gelsolin is a protein made in the muscles and plays an important role in the structure of cells that make up the different tissues in the body. In AGel amyloidosis, a genetic mutation in the gelsolin gene results in abnormal gelsolin which forms amyloid deposits.

Your Word of the Day is Apolipoproteins. Produced mainly in the liver, apolipoproteins (such as ApoA1) bind & transport other substances in the body. ApoA1 is the main component of HDL (the good type of cholesterol) in the blood, & also plays many other important roles in the body. In AApoA1 amyloidosis, mutations in the ApoA1 gene cause the abnormal AApoA1 to misfold & form amyloid deposits mainly in the kidneys, heart & liver.

Your Word of the Day is…

Apolipoproteins

Produced mainly in the liver, apolipoproteins (such as ApoA1) bind & transport other substances in the body. In AApoA1 amyloidosis, mutations in the ApoA1 gene cause the abnormal AApoA1 to misfold & form amyloid deposits mainly in the kidneys, heart & liver

Your Word of the Day is Lysozyme. Lysozyme is a protein found all over the body that is produced in the liver, gut and by some immune cells. It plays a role in fighting bacterial infection, however it’s usual role outside of that is not known. In ALys amyloidosis, a mutation in the gene for the lysozyme protein results in an abnormal, amyloid-forming protein. ALys amyloid deposits most commonly affect the kidneys, liver and gut.

Your Word of the Day is…

Lysozyme

A protein found all over the body that is produced in the liver, gut & by some immune cells. It plays a role in fighting bacterial infection. In ALys amyloidosis, a mutation in the gene for the lysozyme protein results in an abnormal, amyloid-forming protein.

What happens after receiving a diagnosis of ATTR amyloidosis? YouTube video by Amyloidosis UK

What happens after receiving a diagnosis of ATTR amyloidosis?

Christine Chiti, a clinical TTR nurse specialist at the National Amyloidosis Centre in London, talks about the personal impacts of a diagnosis of ATTR amyloidosis & what to expect as a patient following a diagnosis.

youtu.be/A5aweIkUeDs

Amyloidosis is rare.
Delayed diagnosis is not.

If you or someone you love has unexplained heart issues, numbness, or fatigue, it’s time to ask about ATTR-CM.

Early awareness matters.

Learn more: AskAboutATTR.org
#ATTRCMAwareness #KnowATTRCM #HeartHealth

Your Word of the Day is Proteasome Inhibitors (PIs). These are a class of medicines that have been used in AL amyloidosis for about the last 10–15 years. ‘PIs’ help trigger one of the body’s natural processes of killing cells. By doing this, the abnormal plasma cells that are multiplying and spreading uncontrollably are able to be targeted and destroyed by the body.

Your Word of the Day is…

Proteasome Inhibitors (PIs)

These are a class of medicines that have been used in AL amyloidosis for about the last 10–15 years. ‘PIs’ help trigger one of the body’s natural processes of killing cells.

FDA lifts hold on second Intellia Phase 3 gene editing trial The FDA has allowed Intellia to restart a Phase 3 study of a gene editing therapy for a heart disease caused by misfolded proteins, lifting a hold that was ordered after a patient in the study faced a...

The FDA has lifted its hold on Intellia’s second Phase 3 gene editing trial in transthyretin amyloidosis, clearing the way for both previously paused studies to resume.

Kevin's Rambles fundraiser for Amyloidosis UK Help Cynthia Walder raise money to support Amyloidosis UK

We’d like to thank Cynthia Walder for raising £1,002 for our charity in memory of her friend Daphne Ralph who passed away from AL Amyloidosis last year.

Cynthia, along with a group of Daphne’s family & close friends, walked a mile a day for the month of November.

www.justgiving.com/page/kevinsr...

Supporting people living with ATTR amyloidosis YouTube video by Amyloidosis UK

What support is available in the UK for people living with ATTR #amyloidosis?

In this video Christine Chiti, a Clinical TTR nurse specialist at the National Amyloidosis Centre in London, provides an overview of the types of support people can access.

youtu.be/RdtL2iqtf4M

Your Word of the Day is amyloid fibrils. These are abnormal proteins that build up in the body’s tissues and organs causing amyloidosis, a group of rare diseases. These amyloid fibril deposits can damage organs and, if left untreated, may lead to life-threatening complications.

Your Word of the Day is…

Amyloid Fibrils

Amyloid fibrils are abnormal proteins that build up in the body’s tissues and organs causing #Amyloidosis, a group of rare diseases. These amyloid fibril deposits can damage organs and, if left untreated, may lead to life-threatening complications.

NB: AstraZeneca UK sponsored this article and contracted the authors for their time spent on the article. It is intended for healthcare professionals, policymakers, and patient organisations.

Your Word of the Day is: Fibrinogen — the precursor protein in AFib amyloidosis which mainly affects the kidneys. Produced in the liver, fibrinogen plays an important role in blood clotting, inflammation and wound healing. AFib amyloidosis is a hereditary condition — it is caused by variants in the fibrinogen gene that result in the liver making abnormal fibrinogen that misfolds and forms amyloid. This variant or mutation may be passed down in families from parent to child.

Your Word of the Day is…

Fibrinogen

Produced in the liver, fibrinogen is a protein that plays an important role in blood clotting, inflammation & wound healing. In AFib amyloidosis, which mainly affects the kidneys, the liver makes abnormal fibrinogen that misfolds & forms amyloid.

#amyloidosis

Implementing the Rare Diseases Action Plan: learnings from amyloidosis care Networked models of care have the potential to provide better access to specialist care for rare diseases in the NHS. The government committed to establishing an innovative networked model of care for...

Our own Managing Director Kate Taylor and Trustee Vince Nicholas co-wrote this article in the Health Service Journal along with Katharine McIntosh of Cardiomyopathy UK:

“Implementing the Rare Diseases Action Plan: learnings from amyloidosis care“

www.hsj.co.uk/service-rede...

Absolutely agree, we’re just watching the development with interest at this stage.

Misdiagnosis is such a huge issue for amyloidosis, especially—it seems—in the US.

Watch this space…

“In summary, both [AI techniques] can accurately identify patients with cardiac amyloidosis across a range of health care settings. Both techniques represent useful diagnostic tools that could be easily incorporated into clinical practice to help raise the suspicion of CA…”