Date: Thu, 14 Oct 1999 15:17:53 -0300
Subject: [internaf] Idebenone: Promising result...
As most of you know, Idebenone is now being tested
in Europe. One or our
member (Sabine, Switzerland) is trying it with both of her daughters (FA).
Recently, she posted some promising news on a French forum, and we
wanted to share it; so I'll try to translate it to the best of my knowledge.
Hi to all!
Please allow me to share my enthusiasm with you.
When Dr. Munnich accepted to prescribe Idebenone
to my daughters in July
98, he asked me to perform routine home check-ups every 6-8 weeks... just
traditional neurological tests (on video...) with test on elocution, and a
writing test, to see if something was happening.
Last night, Sarah and GaÎlle did their 3rd
testing, and I was really
enthusiastic about the results... There was a radical change in their
handwriting. To test that, they must copy a short text (always the same)
and I time them- with a stopwatch. The baseline was established at the beginning
of the treatment, and 6 week ago they copied the text for the 2nd time,
which was written a little bit faster than the first time but with no
improvement on the handwriting quality.
But last night, I was stunt to find a perfectly
readable text, with almost
no shaking, and written in the same length of time as before!
You all know the feeling of writing something with
difficulty, added with
the frustration of not being correctly read. So you must understand my
It's wonderful! And this time, the proof is tangible... on paper!!!!!!!!!!!
(I won't hear anymore that Idebenone acts as a placebo....)
I felt like screaming my happiness to the world...
and I thought that
sharing such a promising result with you was a must.
In one month, we are going to Paris for heart
tests and to meet again with
Dr. Munnich. And I hope to run into Pierre Rustin - like the first time I
was there - and this time, I'll give him a big kiss. To THANK him for his
perseverance and for the hope he gives us to beat Ataxia.}
Bonne journÈe à tous!
XOX Sabine :-)
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