Talk 7: Progress in Estonia

Ksenia Sokolova, Laura Zirel

Estonian Spina Bifida and Hydrocephalus Society

Background: Until 1985 in Estonia Spina Bifida and Hydrocephalus pathology was considered to be untreatable and there were no actions to handle it.

Methods: In 1988 the first initiative was started to register all the Spina Bifida and Hydrocephalus and provide treatment at the Tallinn Children Hospital. Since 2012 Estonian Association has started to implement programmes for raising awareness on the importance of folic acid for preventing Spina Bifida and Hydrocephalus pathology. Today there are 127 Spina Bifida and 233 Hydrocephalus patients being followed in Estonia.

Results: We have observed a sharp decrease in birth rate of children with Spina Bifida and Hydrocephalus pathologies and have initiated a project to analyse genetic data collected in collaboration with Estonian Gene Bank to explore this. The project is run under EU ERASMUS+ programme. Estonian Association actions have led to creating a stable system for childhood age Spina Bifida and Hydrocephalus patients for both treatment and social care. Current struggle is to make a system to last for adulthood patients for ensuring their better health and employability. This would improve patients’ independent living.

Conclusion: We would be happy to collaborate with bigger Spina Bifida and Hydrocephalus associations on sharing their experiences in developing treatment and social care support systems for adult patients.