Maryze's story - Part 3

In February 1997 my brother, Onard, returned from his 6 month exchange program at Trinity
College in Dublin, Ireland. To hear the latest developments in Pompe disease,
he came with us to the patient meeting of VSN. At that meeting I introduced him
to Dr. Arnold Reuser. They talked and a little while later Onard applied for a
training opportunity at the Department of Clinical Genetics of the Erasmus
Medical Center in Rotterdam. He worked there from March 1997 till March 1998
and participated actively in the research in Pompe knock out mice and the
effect of enzyme replacement therapy derived from genetic modified rabbits.

He was not allowed to tell us anything, but my father always asked him if the sun
was shining in Rotterdam or if it was cloudy. Often the answer was that it was
shining. Later we heard from Dr. Arnold Reuser that it was sometimes tough, as
some mice got into an anaphylactic shock during the treatment with
alpha-glucosidase. This was a serious adverse effect, and then it is even more
serious when it concerns a disease your sister is suffering from. Luckily these
adverse effects could be managed well (Human Molecular Genetics, 1999, Vol. 8,
No. 12 2145-2153).

 

Thesis of Dr Anges Bijvoet, with a contribution from my brother, Onard Schoneveld.