english español français nederlands português italiano
International Federation for Spina Bifida and Hydrocephalus
home search sitemap contact disclaimer
International Federation for Spina Bifida and Hydrocephalus - Homepage

Newsroom archive

Subscribe to our newsletter

Unsubscribe from our newsletter

 

Newsroom

What's new?

not feeling alone…

 

counting votes during parent meeting in Moshi

Representatives from the Swedish spina bifida group visited the IF projects in Moshi and Dar es Salaam. In both projects, they attended the local parent meeting. The visitors were impressed by the organisation of the Moshi parent group, their democratic election system and the ambition of the parent committee. Both meetings functioned as a forum to share experiences, questions, anxieties and stories of hope between parents from Sweden  and parents from Tanzania.

 

sharing experiences

Sharing experiences and belonging to a wider group is of major importance for parents facing obstacles in life. This is the same for parents in the North and the South. The two locally organised parent meetings in Moshi and Dar es Salaam were an excellent forum to share experiences, questions, anxieties and stories of hope.

Alma Sykes the paediatrician of the CCBRT project in Dar Es Salaam said it was of great value for the parents of Tanzania to hear not only of the good sides of the Swedish children's lives, but also the difficulties and complications faced in the North. Everybody in the audience were all ears: Karin Bergren  talking about her son's latest very complicated shunt operations, Eva Tofft  describing huge complications with her son's pressure wounds, Liiso Åkerberg talked about shunt complications in the past and Renée Höglin described her son's life in being a pilot, the first child with a disability in kindergarten, school and so forth and what this does to his self esteem, being singled out as odd in every new situation. She also talked about shunt problems, about pressure wounds, her son's bad infection (the multi-resistant MRSA-bacteria after a surgery) which in the end caused him to have to amputate his legs below his knees. All of this was important for the parents. In the Swedish group all felt that they as well as the Tanzanians share huge problems. It is not only about material resources but about shared anxieties, worries and having to live with these dark sides and yet be hopeful and loving as a parent.

 

 

 

More articles

7/02/2008 IF international ListServ
3/09/2008 Medicina e Persona Rimini Meeting 2008
2/06/2008 Endoscope installation at Hue Hospital, Vietnam
2/03/2008 Dutch Health Council advices on optimal use of Folic Acid
12/02/2008 IF visit to the Ugandan Parliament
11/02/2008 Introducing Olivia Nakato
12/02/2008 The gift of Deep Experience
11/02/2008 Introducing Rebecca Nakitto
11/02/2008 IPATH training in M'bale, Uganda
17/01/2008 AVSI and IF cooperate in Uganda
12/11/2007 IF-FFI meeting on mandatory fortification
25/10/2007 Luis Quaresma (Portugal) reports from Angola
11/10/2007 PRACTICAL DETAILS IF–FFI MEETING ON PREVENTION
25/06/2007 Endoscopic Third Ventriculostomy in progress
21/06/2007 Africa and "our" children
31/05/2007 Stories from Africa
11/05/2007 Clean up awareness campaign organized by SHAK - Nairobi
9/05/2007 5th International NTD Conference
6/04/2007 IF training visit in Vietnam
6/04/2007 Training in the Go Vap orphanage
2/04/2007 WHO seeks disability experts through IF
20/02/2007 PhD study on the effect of Spina Bifida on parents
18/01/2007 Home visits in Moshi area
9/01/2007 Trolls and spina bifida
4/01/2007 The Independent Living Center and Munishwor Society of Katmandu, Nepal, established a special contest
22/12/2006 not feeling alone…
13/12/2006 UN adopts Disability Convention
26/10/2006 Proposal for mandatory fortification of bread approved
25/10/2006 Conference Medicina e Persona, Italy
19/10/2006 article Clementina Isimbaldi for the Italian newspaper Libero
16/10/2006 Dear Friends of CCBRT
10/10/2006 without creating an NGO island…
10/10/2006 Short report from Poland
10/10/2006 Preventing Spina Bifida through Folic Acid Flour Fortification
4/09/2006 Dutch physicians succeeded in bringing back feeling in penis
23/08/2006 Elections are Congo's hope
7/07/2006 Resolution on active termination of life of newborn children with impairements and the right to live
12/04/2006 UK wants to improve folate status young women
4/04/2006 Update on IF's Campaign for Mandatory Food Fortification
31/03/2006 CIC treatment in Vietnam
30/03/2006 Update on the IF Conference in Helsinki
28/02/2006 1st national update on Spina Bifida and Hydrocephalus
19/01/2006 New study comparing two hydrocephalus treatments in Africa
18/01/2006 IF President to attend First National Conference in India
18/01/2006 IF lobbies Irish MEP for mandatory flour fortification
19/12/2005 IF and its Dutch member BOSK lobby against the “Groningen protocol”
19/12/2005 Oldest person with spina bifida
15/11/2005 IF's African workshop
10/11/2005 Ireland's IASBAH and IF towards European Food Fortification
10/11/2005 Meeting with Dutch physicians de Jong and Kompanje
24/10/2005 BBC Radio 4 programme on spina bifida in Guatemala
18/10/2005 NEW Publication from the Spina Bifida Association
12/10/2005 Tom Baroch reports on the situation in Guatemala
28/09/2005 Training in Thailand
28/09/2005 Second conference: "Building Bridges"
28/09/2005 A National Live Satellite Broadcast and Web Cast
28/09/2005 WHO resolution
28/09/2005 Meet Up!
28/09/2005 New staff in the Brussels IF-office
4/08/2005 July 27, 2005: Adult day
15/07/2005 IF adopts two resolutions to the United Nations
12/07/2005 32nd SBAA and 16th IF Conference, Minneapolis, 26-29 June 2005
13/06/2005 A long process to become adult for disabled teenager
27/05/2005 Ethics workshop
18/05/2005 Workshop on ethics with new accessed EU countries
17/05/2005 IF voices its opposition to European Parliament report on food fortification
14/03/2005 IF voices its opposition to European Parliament report on food fortification
14/02/2005 MY SON IS A NORMAL CHILD
13/02/2005 THE IMAGE OF SPINA BIFIDA IS INCORRECT
13/02/2005 EUTHANASIA ON CHILDREN WITH SPINA BIFIDA IS MURDER
13/02/2005 Bosk: No legal or policy-making room for active euthanasia
21/01/2005 Revolutionary advance in medicine
29/11/2004 LIESJE
26/11/2004 Supporting disabled adults as parents
24/11/2004 IF African workshop: welcome word Pierre Mertens
29/10/2004 Disabled people’s costs of living in UK: ‘More than you would think’
13/09/2004 crossing Borders - opening speech - Eli Skattebu
8/09/2004 Emily's letter to the President
8/09/2004 Crossing Borders - Opening Speech
6/09/2004 IF award 2004
6/09/2004 Closing Speech - Pierre Mertens - at Crossing Borders
6/06/2004 opening speech Pierre Mertens at the concert
29/05/2004 Friends Of IF
5/04/2004 ETV as the primary treatment of Hydrocephalus

subscribe to our newsletter

 

 

IF Neurosurgery

Flour Fortification Initiative

Council of Europe

Include Everybody

European Year of Intercultural Dialogue

IFSBH Annual Report 2007

Global Partnership for Disability and Development

Folsaeure

International Disability and Development Consortium