Video - Julia's Story: From CLL Diagnosis To A Doctorate Study Of How CLL People Use The Internet.

[HAIRBEAR_UK]

Julia shares with us: her experience of CLL diagnosis, first questions, the general doctor’s knowledge, how being selective when sourcing information is important, Julia discusses the importance of relationships and working together with her doctors, and following what's happening in the community. How this all lead to Julia’s interest into how people use on-line communities and information resources to support and inform each other, That not all have access, are able or confident using the internet and there is a large older group of CLL patients we don't know much about.

youtube.com/watch?v=9SP5OML...(Not working as expected?)

Brian's Story: A Husband and Wife's CLL Diagnosis, Understanding and Coping Together.

Brian shares with us: how he learned of and reacted to his wife's diagnosis, how that affected him, what he understood and how they discovered what this meant. how they both gained their knowledge to put things in context, how learning and information networks were key, how on-line resources countered some of the isolation while they supported each other.

youtube.com/watch?v=lwmRR31...(Not working as expected?)

More video of CLL patients and Carers sharing their own story

healthunlocked.com/cllsuppo...

[fieldmeadow]

Thankyou both for taking the time to set up these videos. Julia reminded us of all those who have no internet use for one reason or another. Such folk must feel more isolated without access to online communities and wider information. And, yes, more needs to be done to reach them.

In fact, I only have basic computer skills and don't know how to send photos or videos etc. but I can get around sites sufficiently to make contact with others, read posts and learn about the latest cll information (and I'm only in my early/mid 60's!)

Brian, thankyou for your honest (and to some extent emotional) video. It has probably given many of us a better understanding of how our husbands and family members really felt when hearing about our diagnosis - especially when outwardly they may have wanted to appear 'strong' for us.

Continue to journey well, together.