National Amyloidosis Centre Patient Forum

Amyloidosis => Local Support Groups => Topic started by: Thedociam on February 02, 2020, 01:28:46 am

Title: Support Group for N.Ireland?
Post by: Thedociam 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@doctors.org.uk
Thanks for listening.
Barry

Title: Re: Support Group for N.Ireland?
Post by: Martin Coyle 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)