Adaptations to life when affected by the rare disease LHON

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Instituto Reconvexo

Published on Streamed live on Mar 31, 2022
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Today's episode of LHON for LHON, at the beginning of the Brazilian autumn, journalist Fernanda Loydi, who has been affected by LHON since 2019, interviews Jonas Rodrigues Junior, from Fortaleza. Affected by the rare disease LHON at the age of 14, which marked his adolescence and early adulthood with the need for numerous strategic adaptations to continue his dreams and to establish overcoming and his quality of life. Today, at 27 years of age, graduated in Accounting Sciences from Faculdade de Fortaleza/UNIP, Jonas has a promising professional career in one of the largest financial institutions in Brazil and still accumulates victories and connections in the sports field, setting a rich example that life cannot stop. LHON - Leber's Hereditary Optic Neuropathy is a rare, genetic, hereditary disease that manifests itself through a mitochondrial mutation that occurs inside cells and can lead to abrupt vision loss, thus creating a new and surprising pace of life for the affected person who suddenly becomes a PWD (person with a disability) in the field of vision. In general, LHON affects young people, especially males, but more and more women are being diagnosed with this disease, which leads us to the need for in-depth research, identification of this public health problem and the commitment of public policies in the Brazilian health system to map these cases and serve the affected people and their families in a dignified and welcoming manner. Learn more about LHON at: http://ireconvexo.com.br/sobre-a-leber/ Support the maintenance of the work and projects carried out by Instituto Reconvexo: http://ireconvexo.com.br/doacao/ Donations at: https://www.catarse.me instituto reconvexo sustentabilidade For additional information, the following groups are open: WhatsApp: https://chat.whatsapp.com/5XOWlFURyiS ... INSTAGRAM: / lhonbrasil #LHON #LHONBRASIL #LHONAMERICALATINA #LEBER #LHONPLUS #doençasraras #oftalmologia #neuroftalmologia #baixavisão Coordination and Curatorship: Valéria Silvestre

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