Expanding the Spina Bifida and Hydrocephalus network into Ecuador

14 September 2017
Child-Help supports APEBI, the spina bifida association from Argentina, to expand the Latin American and the Caribbean Network for Spina Bifida and Hydrocephalus. This summer a delegation visited Ecuador, to help to improve the quality of life of persons with Spina Bifida and Hydrocephalus (SB/H) and their families in this country. Health care professionals, parents and young persons with SB/H were invited and participated in the sessions organised at the Hospital León Becerra. Dr. Santiago Portillo gave a presentation, emphasizing the importance of multidisciplinary clinics, and the doctor-patient relationship. It was remarkable to discover that there is practically no information about Spina Bifida and Hydrocephalus in Ecuador. More emphasis on prevention is also needed. Goals of the network have been set. Ms. Carolina Chávez, the project's representative for Bolivia, explained how their project is working. The participants agreed that the doctor-patient relationship should be strong to foster trust.  Families need information and support in education towards independent living.  A young woman with SB/H felt so eager to meet other young people with these conditions that it was decided to set up a Latin American and a Caribbean youth group.Two families in Ecuador have already committed to start an organization. Healthcare professionals have expressed interest as well. A Memorandum of Understanding was signed by the participants of the meeting listing the goals to achieve.

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