Amyloidosis

[FinchMason]

Hello All

New on here, anyone have any experience with Wild Type Amyloidosis, have been diagnosed with this recently and have been given lifespan of 2-5 years average. All info would be greatly appreciated

[MichaelJH Heart Star]

Hello and welcome to the forum! Sorry to hear about your diagnosis. I had not heard of it before and had to look it up on the NHS website. Hopefully you will be able to maintain a good quality of life for quite a few years. Having not heard of it before I am unsure that it has been mentioned here previously. Maybe there is a forum member with some knowledge out there?

[FinchMason in reply to MichaelJH]

Thank you for your reply, had two more reply's will give more info on my prognosis soon

[Hidden]

Hi,

Welcome to the group and sorry to hear about your diagnosis.

Have you been referred to the National Amyloidosis Centre in London? This is a link to the patient information on their website.

ucl.ac.uk/amyloidosis/natio...

[FinchMason in reply to Hidden]

Spent three days at Royal Free Hospital which the home of the National Amyloid Center London for tests, very professional and understanding , it was they who confirmed problem after the flagging up after a scan at Papworth Hospital.

[Milkfairy Heart Star]

Hi FinchMason

I am sorry to hear you have diagnosed with Amyloidosis.

The National Amyloidosis Centre that Tynemouth mentioned is based at the Royal Free Hospital in London.

royalfree.nhs.uk/services/s...

I have an usual Heart Condition too and I am very grateful for the very good care I receive at the Royal Free which includes inpatient care in Coronary Care at least once a year.

[MichaelJH Heart Star in reply to Milkfairy]

A friend transferred to Royal Free for treatment for an (unpronounceable) auto-immune disease requiring monthly transfusions. He is very happy with the treatment there having been dissatisfied with the local hospital.

[FinchMason in reply to Milkfairy]

Yes, it is rare, probably 500 recognised cases per year in U K. Fantastic hospital .

[Deltinha]

Hi there,

My father also has Wild Type Amyloidosis and I'm wondering what treatment you have been prescribed? He doesn't live in the UK and has been prescribed Tafamidis (very expensive, so we need to go through the courts). We may need to import something else, so just wondering what has been used in the UK?

Hop you are well, FinchMason.