Author Topic: Support Group for N.Ireland?  (Read 439 times)

Thedociam

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  • Posts: 1
  • Reason for joining: Patient
  • Diagnosed: 2019
Support Group for N.Ireland?
« on: February 02, 2020, 01:28:46 am »
I know there are a core of amyloid patients in the country who may or may not be aware of the treatment options available to us. I'm a newbie, Dxd With hATTR in Aug 2019 and hoping to start patisiran this month. What about getting together as a group to ensure doctors are aware of amyloidosis possibilities in practice and to give a shoulder for the new Dx? I live in Belfast and am somewhat restricted by a need for 24/7 oxygen but I'm ready to help. Contact me either through the forum or bbradley@docrors.org.uk
Thanks for listening.
Barry
Barry

Martin Coyle

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  • Posts: 3
  • Reason for joining: recently diagnosed
  • Diagnosed: Leeds General Infirmary Cardiology Dept
Re: Support Group for N.Ireland?
« Reply #1 on: February 08, 2020, 06:43:12 pm »
Hi Barry.

My name is Martin. Hope you are keeping well and responding with the Partisirin. Have just been diagnosed with ATTR Hereditary Amyiodosis through the NAC at The Royal Free.

I live in Leeds, West Yorkshire and am interested to see how you are doing since August.

Look forward to hearing from you either through the forum or at coyleshouse@btinternet,com

Regards,
Martin.

PS would be happy to make contact with anyone else either diagnosed or suspected with TTR Hereditary Amyloidosis  (T60A)