Do you have
a question for AGSA? Do not hesitate to ask any questions you might
have about genetic conditions. The request for information
page is also available for your questions. The questions below are
asked frequently by many people.
can be obtained from AGSA.
Q: Am I the only
A: No. And it
is not your fault. A genetic disorder does not discriminate
Q: Is it Ok to
A: Yes, it is.
AGSA has support groups for people who are having difficulty.
Q: Who else can
I talk to?
A: AGSA offers
a networking service where families of people suffering similar conditions
can get in touch with each other.
Q: What other
information is there?
A: If you become
a member of AGSA you will receive monthly newsletters, with details about
Q: What is the
usual reaction of parents when they find out their child has a genetic
A: Grief reaction
to disability : Shock, Panic - fight or flight "Let me out of here",
Disbelief, Denial, Confusion, Despair, Anger, Depression and anger,
Guilt and /or blame, Gradual reality, Resolution
Q: What do support
A: They provide
contact with somebody who will listen and understand, Provide up to data
medical information, Provide helpful tips from other parents or affected
individuals, create awareness and early diagnosis, and just when you feel
you are in a rut provide motivation.