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

[HAIRBEAR_UK]

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?)

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

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?)

More video of CLL patients and Carers sharing their own story

healthunlocked.com/cllsuppo...

[nancyjo]

Great! Thank You.

[PaulaS Volunteer]

Thank you for sharing this, Brian and Julia. It's good to see faces and hear voices of people whom we've just known from written words before.

[splashsplash]

Hi Brian and Julia,

thanks for this vid, I'm sure it will be particularly useful to newly dx CLL patients. It helps make that moment

when the consultant tells you you have an incurable disease and to go home and look it up on the internet more human. Must be so much worse and more isolating when you can't even do the looking it up on the internet part.