Author Topic: hi  (Read 4980 times)


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« on: January 26, 2015, 09:55:36 am »
Hi, my name is Anita and I'm 47. I was diagnosed with AL amyloidosis in March 2014 and had a
Stem cell transplant in June 2014. I'm ok now just being monitored. I have AMY in my kidneys, spleen
and heart.
I think this forum is a fantastic site as at first when you are diagnosed you are so scared and feel
so alone. If it hadn't been for Pat Pinchen putting me in touch with my dear GA Lesley who was
with me every step of the way, through the transplant.
Everyone needs support with this disease so never be afraid to ask questions that only we patients
understand and can answer. Xxx


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  • Posts: 177
  • Reason for joining: Amyloid patient (AL)
  • Diagnosed: December 2012
Re: hi
« Reply #1 on: January 28, 2015, 10:51:36 am »
Hi Lovely

So good to see you on here.

Its great to have the site isn't it. Putting us even closer in touch with everyone.

I think just seeing the posts on FB Amy forum makes you realise how we really are here for each one of us. When one of us is feeling down, there's always someone ready to prop us up.  Its lovely to feel the comradeship that comes out of having such a horrible diagnosis/disease which comes in all shapes and forms for us.

I don't know how possible this would be but I think some people on here would really benefit having Jim Taylor who lives in America, on here. He's such a wonderful man, going through so much himself. He is so helpful to us 'young uns' as he has had Amy now for 35 years!

Not sure what Miriam thinks of giving him an invite - maybe Pat could fill you in more Miriam on Jim. He's a very special man to a lot of us.

Love and hugs Nita


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  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
Re: hi
« Reply #2 on: January 28, 2015, 10:51:47 am »
Hi Anita,

So pleased your SCT is behind you and that you are now on the road to recovery. Glad to have been able to help in a small way. Contact between sufferers is so important for mutual support. The forum has come at just the right time for you. Take care.  :)

Miriam Vered

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Re: hi
« Reply #3 on: January 28, 2015, 10:58:54 am »
Welcome Anita. I look forward to reading your posts.

The forum is now open to all amyloidosis patients, families and carers. So please invite anyone you think may be interested. It is primarily intended for NAC patients but members from abroad are also welcome to join.


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  • Posts: 177
  • Reason for joining: Amyloid patient (AL)
  • Diagnosed: December 2012
Re: hi
« Reply #4 on: January 28, 2015, 11:08:31 am »
Pat, would you like to invite Jim?
I am more than happy to do it though.
I just think our Amy veteran would help us and maybe we could help him too.