We welcome input from all affected by MDS

Any ideas, thoughts, contributions for inclusion on the website

Moderator: Steering Committee

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We welcome input from all affected by MDS

Post by MDSAdmin » 06 Nov 2008 14:48

Please use this topic to make any suggestions (polite if possible) as to how we might make this website and associated discussion forum more useful to you.
Possibly you have ideas that would have made your life better that you would like to share with others.

If you have suffered MDS, what about offering support to others new to this infliction (problem shared ... etc)?

Would you see this as a useful way of contacting people in similar circumstances to yourself?

Should access to the discussion forum be restricted to patients and carers identified by the MDS Foundation?

Would you be prepared to provide a "My Story" contribution for publication on the website? Any such stories would be made anonomous and subject to editorial adjustments agreed by you before publication.


Re: We welcome input from all affected by MDS

Post by Mike » 17 Nov 2008 12:38

Really like the website, but a bit thin on content!:-"
Would it be an idea to include a section on 'clinical terms' - I spent ages not understanding what an Autologous transplant was, and then even longer pondering on how it could possibly help ](*,)

How about PBSCT, Allogenic, and what in the world is a Hickman line :-k ?
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Re: We welcome input from all affected by MDS

Post by Pete » 17 Nov 2008 12:46

Mike, don't know where you've been hiding yourself, but there's a great little bookie by Michelle Kenyon on the whole transplant process - 7 Steps
Also, Leukaemia Research have a lot of background documents - maybe we should have a few more links on the website pointing to specifics.

ALso, just found this really good glossary on the Anthony Nolan site
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Re: We welcome input from all affected by MDS

Post by Frank » 17 Nov 2008 12:53

I'd really like hear from others on the various social aspects of MDS.
In particular, impacts on family and friends, and what support people have received from their workmates or, in the case of the 'self-employed' how they have managed their business through their illness.

With this in mind, I have started a new topic - MDS - Social Impacts - interested to hear of other experiences.
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