Author Topic: Newsletters  (Read 4239 times)


  • ***
  • Posts: 177
  • Reason for joining: Amyloid patient (AL)
  • Diagnosed: December 2012
« on: January 22, 2015, 12:18:34 pm »
I have just seen the newsletters and had chance to read them - I must be being a sentimental fool today but I have a tear in my eye reading about peoples diagnosis/prognosis and the fundraising that people do. I so wish this information had been all to hand when I was first diagnosed as I did the worse thing possible and googled it!
So nice to be able to pick up information all in one spot too.
I so wish my husband were here today to see how things seem to have progressed even since I was first diagnosed.
Just really wanted to say how great I am finding this forum already.
Will be even better when more people register and we can chat more.


  • *****
  • Posts: 600
  • AL - extensive in skin. mouth + palatal nerves '04
Re: Newsletters
« Reply #1 on: January 22, 2015, 07:30:26 pm »
The NAC has developed significantly since my first visit in 2005. The accomodation has moved to its present location as the number of patients has increased and facilities in all areas have improved beyond recognition. Shortly after my arrival on the second day of my first appointment the office manager, who had just ONE assistant, announced to the 3 patients !!! in the tiny waiting room that no scans could take place that day as the lorry carrying the radio-isotope tracer had broken down and would not be able to deliver the all important supplies which have a short shelf life! ! Off home we went to return a month later when all was well. The ECGs and Echocardiograms were done in a room no bigger than a cupboard! A staff member's bike was stored in the one loo! You could make your own hot drinks with the kettle provided. Fresh milk and biscuits were supplied and there was a tin for the money! Fast forward a few years later and as well as hugely improved patient facilities, the number of administrative and medical staff has increased as necessary. Moreover they are all exceptionally lovely.....caring, friendly and helpful. Patients can now receive their free light chain results on-line, speak to a member of the medical team or admin person on the phone, receive an email response by return from the Office Manager. In my early years as a patient, fundraising was in evidence but publicity was sparse and www. justgiving did not exist! The UCL Amyloidosis Research Fund was in existence and managed by mega efficient and super lovely Beth Jones, whose role has also partly changed over time. With Miriam's appointment as Amyloidosis Awareness Project Co-ordinator, 2/3 years ago, we now have patient newsletters, an updated more informative and user friendly website with a comprehensive patient information section, a UK Amyloidosis Awareness Group (UKAAG) and now this patient forum. We members spread the word and encourage anyone we know who would be interested to use it. All NAC patients will be informed about it in due course and hopefully the number of users will grow. We owe a debt of gratitude to Miriam for her dedicated hard work. We must use it or lose it! Keep chatting everyone!
« Last Edit: January 23, 2015, 09:57:44 am by Miriam Vered »