Author Topic: So what about the future?  (Read 5745 times)

kevinl

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  • Posts: 2
  • Diagnosed with AL Amyloidosis approx - 4 years ago
So what about the future?
« on: December 19, 2014, 09:01:57 am »
I don't know about you but I was pretty scared about what was going to happen to me and what was going to happen with my family. In the early stages when I was first diagnosed I resisted the urge to google information about amyloidosis. By the way I still do! I believe that there is some pretty scary stuff out there according to my wife.

I have put my trust in my doctors and they have taken really good care of me. They have provided the information that I needed at the time and supported me through my treatment. I think it is nearly four years ago now when I was diagnosed with amyloidosis. I know that treatment varies but I had chemotherapy via a range of tablets that I had to take at home, soon after being diagnosed. This made me tired but I got through it with very positive results. Since then I see my consultants and visit the NAC who take great care of me.

This is a serious disease.

I live a normal life...
Kevin

Miriam Vered

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  • Posts: 558
Re: So what about the future?
« Reply #1 on: December 19, 2014, 01:12:32 pm »
Hello Kevin, welcome to the forum.
I think you're not alone in worrying about scary and possibly unreliable information on the internet.
The NAC patient information website aims to provide reliable and comprehensive information about amyloidosis, as well as reassurance and optimism.
I'm interested to know if forum members have any suggestions of new topics they'd like to see added to the patient information site. (www.amyloidosis.org.uk)

« Last Edit: December 19, 2014, 01:14:19 pm by Miriam Vered »