Author Topic: Birmingham support group  (Read 1102 times)

Anita Horton

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  • Posts: 1
  • Reason for joining: Patient Al Amyloidosis.
  • Diagnosed: March 2014
Birmingham support group
« on: June 12, 2018, 06:42:13 PM »
Hi, I am wondering if there is anyone in the Birmingham area who would like to meet up for a chat/,support ?
I am a little disgruntled at not having much support from my local hospital, today it seemed i knew more about AMYLOIDOSIS than the consultant, she explained she didn't know much about it !!!
It occurred to me that there is no-one nearby if you need to vent. I know family and loved ones are fantastically supportive, but sometimes they can be too close and I never want to upset them.
If like me you would just like to bend the ear of someone who really understands, then please get in touch.
I have had AL amyloidosis since March 2013 and a SCT in June 2014. I am 50 years young !

nvroberts

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  • Posts: 51
  • Reason for joining: I have AL amyloidosis and frecently started kidney dialysis
  • Diagnosed: November 2014
Re: Birmingham support group
« Reply #1 on: June 18, 2018, 09:52:51 AM »
Anita,

Disapppointing to hear you do not get much help from your local hospital. I am not too far away, treated at Derby Royal where I get very good help.  Which Birmingham hospital is it? Maybe you can ask to be transferred to another one.

I am not aware of a Birmingham support group, but if you can find any other local patients maybe I could manage to get over that way to meet up, though it would be a big effort as I am not in great condition.

Lesley

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  • Posts: 166
  • Reason for joining: Amyloid patient (AL)
  • Diagnosed: December 2012
Re: Birmingham support group
« Reply #2 on: June 27, 2018, 10:25:32 AM »
Hi Nita

if you want to bend an ear via text or phone - do you have my mobile number? it would be good to just chat. I know what you mean about being isolated though I do have good support from my local hospital. A Thought Nita - do you have Ellen Watters email from Myeloma - she has given me such incredible support. Let me know if you want her details.
Loves and hugs hun
xxx

Duran

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  • Posts: 1
  • Reason for joining: I am a patient
  • Diagnosed: 2013
Re: Birmingham support group
« Reply #3 on: August 18, 2019, 10:32:32 PM »
Hi, I live in Birmingham & happy to join a local support group 😊

sandra.quinn

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  • Posts: 6
  • Reason for joining: I work for Myeloma UK as the patient and carer support manager
  • Diagnosed: n/a
Re: Birmingham support group
« Reply #4 on: October 07, 2019, 10:30:28 AM »
Dear all,

I was wondering whether there was anyone in the Birmingham Support Group (a carer/family member) who would like to be an author for the next edition of AL amyloidosis Matters. I would really appreciate hearing from carers who are interested in contributing.

To get in touch email me at sandra.quinn@myeloma.org.uk

best wishes,

Sandra Quinn

Patient and Carer Support Manager
Myeloma UK