Angelman Today January / February edition 2014 | Page 12

Other parents of children with
Angelman syndrome take offense,
stating that AS is not a ‘disease’, like
diabetes or cancer. How not?

It is perfectly acceptable to speak
about a cure for cancer, knowing that
there might be lasting effects of
tumors even when they have been
removed and that strong
chemotherapy drugs might cause
terrible side-effects.
But it is very very controversial to
speak about a cure for the mental
retardation, or intellectual disability, of
Angelman syndrome.
I have been told not to use the
irresponsible word, “cure”. I have
been told to say, instead, “very potent
treatment”, because the word “cure”
might lead naïve parents to assume
that their children will actually jump
up, play the piano or basketball, and
get a driver’s license, and we don’t
know what the drug will really do.
That is exactly the point. We don’t
know what the drug might do.
It might let Louie’s synapses
suddenly kick in, make connections
faster, remember ideas better, retrieve
knowledge, move muscles. And all of
that might still not allow him to speak
or stop his seizures, but it might allow
him to “think stronger”, and perhaps
that would be sufficient to call it a
cure.
The brain is a part of our body, a
simple organ. As anyone with
treatable depression will tell you,
treatment makes them feel more like
themselves than they do when they
are depressed..

A cure for depression would be a
godsend. Angelman syndrome, like
depression or alcoholism is a brain
disorder It seems to me more
irresponsible, more lazy, more selfish,
NOT to talk about a cure for Angelman
syndrome, and face the inevitable
side-effects and disappointments that
come along with any brain drugs.
We have to wind our minds around the
idea that mental retardation, at least
the kind 6W6VB'