Giving a voice to haemophilia carriers in Latin America
Haemophilia touches the lives of boys and girls, women and men. Women who are haemophilia carriers bear much of the burden, but their voices are rarely heard. While they play a central role in their children’s disease and care, mothers of children with haemophilia often learn they are carriers only through their child’s diagnosis.
The Novo Nordisk Haemophilia Foundation (NNHF) is pleased to support a project team in Latin America working to change this situation. Through interviews, videos and testimonials, women facing common challenges are being given a voice in eight countries: Argentina, Colombia, Costa Rica, Honduras, Mexico, Nicaragua, Panama and Uruguay.
Working closely with healthcare professionals and more than 50 women leaders in Latin America, the project team has developed a podcast, ‘La vida no vista’ (‘Life unseen’) and a toolkit. Entitled ‘Once Upon a Time’, the toolkit contains inspirational stories, prompts and exercises to encourage women to reflect upon their own lives and share their stories.
The project is being carried out in partnership with the Fundación de la Hemofilia Argentina, Córdoba. It is jointly led by Maria Belén Robert, Chapter President, and Yuri Andrea Arango, a psychologist from Colombia. Both women are mothers of children who live with haemophilia or are carriers.
Together with various national and state-level patient organisations, it aims to enable women who carry haemophilia to make informed decisions by expanding awareness and improving access to information and diagnosis. Ultimately, both haemophilia carriers and their children should receive a better standard of care.
By giving a voice and creating a strong support network, it is hoped to make the subject less of a taboo and destigmatise women, so they are seen as not ‘only’ haemophilia carriers but also as people affected by the condition.
