Author Topic: New video from the US, for sufferers of Wild Type TTR  (Read 5862 times)

patpinchin

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  • AL - extensive in skin. mouth + palatal nerves '04
New video from the US, for sufferers of Wild Type TTR
« on: May 25, 2016, 09:28:54 am »
I know there are at least a couple  of Wild Type TTR sufferers among forum members. I hope this video from the respected Mayo Clinic in the US will be helpful  :)

 
New Mayo Video Wild Type TTR Amyloidosis
https://www.youtube.com/watch?v=RnWxzRD1NVk&feature=youtu.be
   Wild-Type Transthyretin Cardiac Amyloidosis - Mayo Clinic
In this Mayo Clinic video, Martha Grogan, M.D., Mayo Clinic cardiologist, provides a description of ...
Pat

Bryangrist

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  • Reason for joining: Patient wild type amyloidosis
  • Diagnosed: About four years ago
Re: New video from the US, for sufferers of Wild Type TTR
« Reply #1 on: January 10, 2019, 04:53:20 pm »
Thanks for the video. I am a sufferer from wild type. Any news about availability of patesarin for treatment in gb yet

Miriam Vered

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Re: New video from the US, for sufferers of Wild Type TTR
« Reply #2 on: January 11, 2019, 02:04:45 pm »
Professor Hawkins' reply:


It’s under evaluation by NICE, and we remain hopeful that there will be a positive outcome sometime in next few months.

WildTony

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  • Reason for joining: Diagnosed Wild Tipe ATTR age 80
  • Diagnosed: October 2018
Re: New video from the US, for sufferers of Wild Type TTR
« Reply #3 on: January 17, 2019, 10:34:01 am »
Great clear video.  Thanks for bringing it to our attention.  The fibril illustration is brilliant.  I was diagnosed with wild type a few months ago and am still going through the medication adjustment process.  Low fluid intake and coming off beta blockers seems to be working very well.

jgrana

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  • Reason for joining: Husband has Amalyoidosis Wild Type ATTR
  • Diagnosed: August 2018
Re: New video from the US, for sufferers of Wild Type TTR
« Reply #4 on: February 05, 2019, 12:49:10 pm »
Thank you for posting this video, it was very informative.

I am writing on behalf of my father who was diagnosed with Wild Type in August 2018.   He is keen to know further about any treatments / medications that are being researched for Wild Type.  I see from the comments posted after this video the mention of Patesarin Treatment and how this is being evaluated by NICE, can you explain a little bit more about this, is this something all Wild Type sufferers could benefit from if it comes available?

Thank you.

Miriam Vered

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Re: New video from the US, for sufferers of Wild Type TTR
« Reply #5 on: February 06, 2019, 05:45:00 pm »
This is Professor Hawkins' reply:
Neither patisiran nor inotersen have undergone trials as yet in WT ATTR (only hereditary ATTR). Tafamidis has of course, but has not yet even been licenced, let alone been reviewed by NICE; all going well, we hope tafamidis will be available within the NHS in 12-18 months.
« Last Edit: February 06, 2019, 06:18:21 pm by Miriam Vered »