Where to find CLL Patient Profiles

First Easter greetings to you all, and many thanks for the great articles you all post.

I've been reading the site for a while, and thought it time to register.

Also joined the CLLSA:

cllsupport.org.uk/

First question I wanted to ask:

A long time ago I read patient profiles on:

ukcllforum.org.uk/

I found that really useful being new to CLL as a patient (although I'm a familial case) given the variability of the condition (don't like to call it a disease, and everyone seems to have CLL/MBL albeit in very low concentrations).

Assume "Health Unlocked" has largely taken over, but guess the ukcllforum still contains lots of useful info on specific issues.

Wondered if there is any equivalent on the new "Health Unlocked" and/or any way to create ?

Also what do people think about this kind of info ?

e.g. If you take the case of Brian Koffman's excellent blog (thanks "Hairbear" for all the links to that):

bkoffman.blogspot.co.uk/

I'd be interested to know how many rounds of Chemo Brian has done by now (it will take me some time to read all his great posts)

I think for several reasons this kind of profile info ideally needs to be maintained, or if not possible, explanation given, and that's tricky.

Lots more questions and thoughts, but it's Easter and time to get out and try and catch a little sunshine - wrap up against the cold !

Ernie (UK).

Last edited by

2 Replies

oldestnewest
  • To create a profile go to your home page...horizontal menu bar far left 'HOME' ...then top right you will see your name, click it and a drop down menu falls and 'Profile' is the second item... click that and make or edit your profile...

    To view another members profile, simply click on rhe avatar...picture... a page opens up with 'About Me' ...that is the person's profile...

    Problem, not many people have profiles yet.

    HTH

    ~chris

  • Welcome Ernie

    There are threads on HU where many share aspects of their experience. You could start a blog headed histories and the community could add their own to share the different colour of their own experience of CLL. This may prove very informative, anonymity may be an issue for many as history can identify individuals. As Chris has mentioned at this early stage in the groups developmentt it has proven difficult to ensure profiles are completed in the minimum..

    HU are in the process of preparing to launch the new platform which will require a little more is provided. It also provides for different categories of post and Archive,filing and information retrieval. Also the provision of a pinned post to allow chosen posts to stay in view, potentially creating easy access to popular threads that could be dedicated for a clinical corner or the recently diagnosed. We are meeting in London next week I hope to be able to post more information to the group.

    Enter as much as you are comfortable with. You mentioned .www.ukcllforum.org.uk there are not many profiles there, although seemingly quiet, posts to the group are responded to and there is much useful information neatly filed away in the archives.They are involved in a project to aid patients share information to learn from each others journey. I believe this is

    CLL Tracker clltracker.co.uk/

    "CLL Tracker has been developed to provide patients with Chronic Lymphocytic Leukaemia (CLL) with information provided by other patients who share the same condition. The data contained is actual patient specific information relating to blood results, prognostic markers, their personal experience of the different treatments and the resulting effects of these treatments."

    Nick

You may also like...