Families Affected

[Onceagain]

Impact of the disease spread beyond the ones given a diagnosis.

youtube.com/watch?v=GZh_dv1...(Not working as expected?)

[Bellated]

Disappointed with the doctors seems common experience.

[readerlist]

Including researchers from outside of the usual disciplines involved is the silver lining of this dark cloud that has taken twenty years of possibilities from a family. 

[Arianne]

Family relationships alter with  time as roles and responsibilities change with the illness. Presenting problems in communication other relatives such as siblings, children,parents or friends may be so uncomfortable that they may deny the illness. They can feel overwhelmed and cut off at a time when they really need each other's support. If the strains are too great they might shut down, feeling hopeless, isolated, and trapped. Sometimes relatives hold back painful news, angry feelings, or resentments. This is toxic keep communicating the reality within a close support network it can be painful emotionally but brings a measure of control.

[carch520]

Brings up alternative therapies.

[tartanterror in reply to carch520]

Like hearing from others in case something missed out on when it's sharing experience and not an advert for some miracle cure.

[Emmaril]

Family support and understanding of trying hard.

[carch520]

Pulls on heartstrings when its children.