How Caregivers Can Help

• By providing clear and adequate information to let patients and their supporters know what's happening and what may happen.

• By building up a realistic picture of the time needed for a full recovery. It is not

"three weeks"!

• By acknowledging and understanding the extent to which a patient's life may be impacted.

• By reinforcing the "benign" aspects of the diseases and conditions, their nature as rarely inherited conditions, and the life expectancy that treatment can confer.

• By arranging support and treatment for depression.

• By helping patients deal with specific aspects (such as weight gain).

• By letting the patient know about support organizations.

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