Ageing with SBH: key topic during the IF EU online workshop

On June 30 and as part of the IF EU online workshop, the IF Working Group on Ageing organised a session on a key topic for our community: ageing with spina bifida and hydrocephalus (SBH). Dr. Sylvia Roozen, IF Secretary General, welcomed all the participants and speakers before giving the floor to Cato Lie, IF Board member, who moderated the one-hour session.

Sharon Levy from our member organisation Spina Bifida and Hydrocephalus Scotland, and the researcher Kevin O’Donnell presented the preliminary results of the survey to which 650 persons replied. The discussion included important topics such as pain, fatigue, mental health, and the impact of incontinence on various areas of life (e.g. employment, intimate relationships). Also, the participants and speakers spoke about the capacity of resilience. People with SBH are able to live a good and fulfilled life and to develop skills and competencies, just like anyone else.

This year, the World Health Organization has launched the so-called ‘Decade of Healthy Ageing’ (2020-2030). This is a great opportunity for the SBH community to evaluate progress and improve our understanding of the lived experience of people ageing with SBH. Therefore, IF will continue working on such an important topic for our worldwide community.

You can take a look at the presentation and at the recording of the webinar.

IF 2012 Position Paper on healthy ageing with SBH titled ‘Unfold their potential. (Y)our return to investment’

If you have any questions about the presentation or the survey, please do not hesitate to contact us [email protected]