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Especialistas em esclerose múltipla discutem o mundo real dos pacientes

Pesquisa inédita com pacientes brasileiros mostra os desafios de conviver com a doença e as dificuldades em relação ao diagnóstico e tratamento


News provided by

Biogen

May 27, 2018, 07:00 ET

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SÃO PAULO, 27 de maio de 2018 /PRNewswire/ -- Brasília sediou nos dias 25 e 26 de maio, um evento sobre esclerose múltipla (EM), o 'MS Summit' organizado pela empresa farmacêutica Biogen, líder no segmento. O encontro marcou o lançamento da Pesquisa Múltiplas Faces, iniciativa inédita que tem como objetivo dar visibilidade aos anseios e dificuldades enfrentadas pelos pacientes na jornada do diagnóstico e tratamento da doença. O evento aconteceu no hotel Royal Tulip Alvorada e contou com a participação de mais de 100 neurologistas que tratam a EM em todas as regiões do país.

"Temos um material inédito que poderá auxiliar muito o médico a entender mais profundamente o que um paciente enfrenta diariamente. E assim, poderão auxiliar os pacientes a melhorar a aderência ao tratamento e qualidade de vida por meio de uma visão mais holística do paciente", explica Marcelo Gomes, diretor médico da Biogen. Além da pesquisa, o evento também promoveu discussões sobre novas tendências, como o tratamento personalizado da esclerose múltipla, uso de biomarcadores e rotas de acesso aos medicamentos para tratamento.

Com a participação de 1.724 pacientes de todo o Brasil, a Pesquisa Múltiplas Faces apresenta uma ampla visão sobre o impacto da doença na vida dos pacientes. Entre os diversos temas relatados, destaca-se a questão laboral - fortemente abalada pelos diversos sintomas da doença, sendo que a fadiga é a mais citada, 91% dos pacientes manifestam esse sintoma, acompanhada por dormência e/ou formigamento (80%) e fraqueza muscular (78%). A qualidade de vida foi abordada pelos diferentes aspectos (físico, psicológico, financeiro, cognitivo e social), sendo que o impacto do fator físico (caminhar, fadiga etc.) é o que mais interfere, atingindo 49% dos respondentes.

Já os relatos da diminuição da autoestima (em 3 de cada 4 pacientes); o alto índice de crises de ansiedade (30%) e de depressão (25%), demonstram a importância de buscar reforçar ou ampliar a inclusão de terapias integrativas, multidisciplinares e holísticas no tratamento da EM. Entre os vários outros pontos levantados, destaca-se a importância do convívio com a família e amigos, seja para a qualidade de vida (49%) ou para a continuidade do tratamento (93%).

O estudo Múltipla Faces, foi conduzido pela Editora Abril, com apoio da Associação Amigos Múltiplos pela Esclerose e patrocínio da empresa Biogen. "Somos comprometidos com a comunidade de EM. Continuamos avançando em pesquisas por novas soluções e serviços para apoiar as necessidades não atendidas para o controle da doença, e acreditamos que esse tipo de trabalho pode dar voz aos pacientes e auxiliar os médicos a melhorar – ainda mais – o atendimento clínico e a qualidade de vida dos pacientes", completa Marcelo Gomes.

Com a mais ampla franquia de terapias para a EM, a Biogen é a única companhia que oferece um leque completo de opções terapêuticas para atender as diferentes fases da esclerose múltipla, além de medicamentos que atuam diretamente em algumas de suas sequelas. Também, em 2008, com o objetivo de melhorar da qualidade de vida e o bem-estar dos pacientes, a empresa criou, no Brasil, o BIA, um programa de apoio que oferece suporte aos pacientes, familiares e cuidadores afetados pela doença. Por meio dele, disponibiliza uma equipe multidisciplinar, composta por enfermeiros, psicólogos, nutricionistas e fisioterapeutas, apta a esclarecer dúvidas a respeito do tratamento.

Saiba mais sobre a esclerose múltipla

A esclerose múltipla é uma doença que compromete o sistema nervoso central. É um processo de inflamação crônica de natureza autoimune que pode causar desde problemas momentâneos de visão, falta de equilíbrio até sintomas mais graves, como cegueira e paralisia completa dos membros. A doença está relacionada à destruição da mielina – membrana que envolve as fibras nervosas responsáveis pela condução dos impulsos elétricos no cérebro, medula espinhal e nervos ópticos. A perda da mielina pode dificultar e até mesmo interromper a transmissão de impulsos. A inflamação pode atingir diferentes partes do sistema nervoso, provocando sintomas distintos, que podem ser leves ou severos, sem hora certa para aparecer.

A doença geralmente surge sob a forma de surtos recorrentes, sintomas neurológicos que duram ao menos um dia. A maioria dos pacientes diagnosticados são jovens, entre 20 e 40 anos, o que resulta em um impacto pessoal, social e econômico considerável por ser uma fase extremamente ativa do ser humano. A progressão, a severidade e a especificidade dos sintomas são imprevisíveis e variam de uma pessoa para outra. Algumas são minimamente afetadas, enquanto outras sofrem rápida progressão até a incapacidade total.

Sobre a Biogen

Na Biogen, nossa missão é clara: somos pioneiros na neurociência. A Biogen descobre, desenvolve e fornece terapias inovadoras em todo o mundo para pessoas que vivem com doenças neurológicas e neurodegenerativas graves. Fundada em 1978 como uma das primeiras empresas globais de biotecnologia do mundo por Charles Weissmann, Heinz Schaller, Kenneth Murray e os ganhadores do Prêmio Nobel Walter Gilbert e Phillip Sharp, hoje a Biogen possui o principal portfólio de medicamentos para tratar a esclerose múltipla; introduziu o primeiro e único tratamento aprovado para atrofia muscular espinhal; e está focada no avanço dos programas de pesquisa em neurociência na doença de Alzheimer e demência, esclerose múltipla e neuroimunologia, distúrbios do movimento, distúrbios neuromusculares, dor, oftalmologia, neuropsiquiatria e neurologia aguda. Para saber mais, visite www.br.biogen.com.

Contatos da Biogen Brasil para a Imprensa

S/A LLORENTE & CUENCA
Tuca Figueira – (11) 3054 3343 / [email protected]
Dayana Cardoso – (11) 3054 3342 / [email protected]

Referências

1.    Neeta Garg1 & Thomas W. Smith2.  An update on immunopathogenesis, diagnosis, and treatment of multiple sclerosis. Barin and Behavior. Brain and Behavior, 2015; 5(9)

2.    Noseworthy JH, Lucchinetti C, Rodriguez M, Weinshenker BG. Multiple sclerosis. N Engl J Med. 2000;343(13):938–52.

3.    Cristiano E, Rojas J, Romano M, Frider N, Machnicki G, Giunta D, et al. The epidemiology of multiple sclerosis in Latin America and the Caribbean: a systematic review. Mult Scler. 2013;19(7):844–54.

FONTE Biogen

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