We crossed borders, had good and open discussions and strengthened our efforts towards a better life of persons with Spina Bifida and Hydrocephalus
1. We crossed the North – South borders and the North learned from the South. They learned from the simple but achievable solutions developed in the South, but also from scientific research done in Uganda where it has been proven that 75% of the new born children with Spina Bifida can stay shunt independent with ETV in combination with CPC
2. In TRS they have crossed borders in the relationship between users and professionals
3. Studies are being completed on our quality of life. 98 % responded positively on the statement ‘I enjoy life’. I can tell you that this is much higher than the rest of the population.
4. The presence of Mrs Sobkoviak, president of the Research Society, is a big step forward in crossing borders between users and professionals on an international level. We agreed to put the cooperation between the Research society and IF on the agenda of both organisations.
It is clear that the quality of our lives is influenced by the positive progress in medicine.
But even more important for our quality of live is to have
- Family ( remember the testimony of Brian yesterday stating that his child with Spina Bifida made him a family person and that he felt this as an improvement of the quality of his life as a parent.
- Knowledge of your own condition ( remember Kristina’s testimony on how the knowledge of her cognitive problems improved her life)
- A meaningful life
- And as an artist I would like to add art, music and love.
We crossed borders
with the increasing input of adults in our organization,
and by the many new contacts and friends we have made.
We can say that here in Oslo
We, the international Spina Bifida and Hydrocephalus community,
This is good and needed.
We need to speak in one voice
and therefore I really welcome
the increased input of our friends from Africa, Latin America, Australia and from the SBAA in America.
This is needed in a changing world
where the majority of the society
including the majority of the medical professionals
is looking at a life with Spina Bifida
as being meaningless and painful
those thoughts should be eliminated.
The knowledge of
and services to persons with Spina Bifida and Hydrocephalus will decrease.
Already now young doctors lose interest in Spina Bifida
because they think the problem is solved.
I’ll go back home from this conference
to go on in the fight for dignity and respect
for children and adults with Spina Bifida and Hydrocephalus.
A fight that can be compared with the fight of
Greenpeace or Amnesty International.
I fight for the right to be different.
I thank the hosting country for this warm and positive conference.
Next year I want to see all of you
at our conference in the USA organized in cooperation with the SBAA conference.
These American conferences are real family events.
Take your partner and your kids around the table
and plan your annual leave now,
make a good sponsoring dossier,
to make it financially possible.
You will not regret it.
See you all next year.