Paula thank you for your information.i have not heard anything about this .but my kidneys are hanging on a thread I'm told so i was not able to take part in any trials. I'm ticking over at the .moment.with your information when I see someone next I'll have all the facts.Thank you Dx

You need to contact them ASAP! Tafamidis was recently approved for use in England!

News
First ever life-saving treatment for rare heart condition available on the NHS
13 May 2024

NHS patients with a life-threatening heart condition are set to benefit from a cutting-edge new medicine which can significantly reduce the risk of hospitalisation and death.

The drug, tafamidis, is the first ever approved treatment for a cohort of patients in England with a rare heart condition known as transthyretin amyloidosis cardiomyopathy (ATTR-CM), where clumps of protein build up in the heart, often resulting in heart failure and potentially proving fatal.

People living with the progressive condition will now be able to benefit from the once-a-day capsule following a recommendation to offer the innovative treatment to more than one thousand eligible patients.

Tafamidis works by slowing the build-up of dangerous protein deposits, with clinical trials showing a 41% reduction in the risk of death in patients taking the treatment compared to patients on a placebo. Patients receiving tafamidis through clinical trials also experienced fewer hospitalisations due to their condition than the placebo group.

The drug is available on the NHS from today (13 May) thanks to interim funding from the Innovative Medicines Fund after the National Institute of Health and Care Excellence (NICE) gave the treatment the green light.

Paula.Thank you for your reply. Royal London hospital.phoned me in January to let me know which type I have &will contact me again in 12mths time.but apart from that nothing.best wishes dx.

Size?...
Amy is tiny mishaped protein made in bone marrow same place as blood cells. Wanders around body in blood stream. Somehow most seem to be selective where they land and cause trouble.

Mine started or was first discovered I'm my pee bladder in early 2019. I was my old GP doctor's 2nd amyloidosis case in 40 years and my urologist first in over 30 years. Sent me to oncologist where I was his first. Everyone pointed to mayo clinics...

I did a LOT of internet searching and learned bits and pieces certainly more than my doctors here in Las Cruces. Seems a lot of heart amyloidosis, also some alzheimers are amyloids related...
I believe mine is gone systemic affecting
Head
Hands
Arms
Thighs
Feet

I am
Dizzy
Weak
Hurting head to feet

I learned that nattokinase which is a food supplement positively helps alzheimers.
I started taking it 7-8 months ago. Urologist last Friday discovered when replacing a bladder stint that the amyloids in bladder has shrunk noticeably.

There are a lot of professionally doctor written articles here at this site...just gotta figure out how to find them. When ya see em read em.

I strongly suggest that you read everything you can find on it. Do a lot of internet searching.

Also become an expert on nattokinase and natto irself..all on the internet.

Good luck and I pray that God gives you comfort while you learn about and how to live with this thing.

God bless you

🙏🙏🏻🙏🏽