Megan Webber, Co-Founder of KnowTheGlow, connected with Marianne Hedlund through an introduction facilitated by Larry Wagh, who serves as the Ambassador for KnowTheGlow in India. Marianne had been in India for a few months on sabbatical and planned to continue her research in Bolivia and South America afterwards. Dr. Hedlund obtained her Doctor of Philosophy degree from the Faculty of Social Sciences at Lund University, Sweden, in 2004. Before this, she pursued her doctoral studies as a PhD candidate at the Center for Disability Research, Department of Sociology, Uppsala University, from 1992 to 1998. She has been an applied researcher at various research institutions, including the former Nord-Trøndelag University College (now Nord University).
Additionally, Dr. Hedlund has held the esteemed position of editor-in-chief for an international open-access journal published via Taylor & Francis, primarily focusing on vulnerable groups and inclusion. Marianne has an extensive global research network in disability, rehabilitation and working life, as well as health and marginalised groups. She has served on various commission assessments Nationally and Internationally and has been an external board representative at Mid Sweden University.
During her time in India, Dr. Hedlund delivered a presentation at Bharati Vidyapeeth College in Pune, Maharashtra, addressing the pressing issue of disability at the 2nd International Conference on Public Health. Her emphasis on the importance of family and parents, particularly in the context of children with disabilities, and her call to bridge the gap between healthcare providers and families underscore the relevance and urgency of these topics.
She spoke about Anita Kar, a professor of public health in India who runs a centre that focuses on birth defects (https://www.birthdefectsindia.com/research-and-team). Nurses refer to the “shock period” when parents discover something isn’t right and seek attention and assistance.
Megan discussed the challenges of rare diseases, particularly lack of awareness, especially in primary care. She agreed about the many difficulties parents face in accessing specialized care due to factors such as travel and cost. She noted that marginalized children are often brought late by their families for evaluation, emphasizing the need to educate and build communication regarding these children and rare diseases within health services.
Marianne advocated for letting families take charge of being families. She shared about her experience following parents with chronic diseases and severe impairments and the benefits they derived from mutual support. She praised self-help groups, citing an example of fathers organizing themselves after meeting at hospitals and subsequently providing each other with support and assistance, even when applying for services. She then interviewed mothers’ groups, finding their stories so powerful that she was moved to tears.
Marianne expressed her appreciation for KnowTheGlow’s approach and awareness, believing that offering such a glimmer of hope can contribute to improving the world a better place. For further information, she referred to the UN Disability Inclusion Strategy on the WHO website (https://www.un.org/en/content/disabilitystrategy/)
Dr. Hedlund has encouraged Student chapters, Researchers, and Healthcare Professionals to work towards preparing Guidelines and Standardizing them so that they are unified in Practice within the sphere of the profession and reach all those in need.
Dr. Hedlund’s collaboration with Megan, Helene, and Larry has been mutually inspiring. They all look forward to sharing more updates on their joint adventures and outreach in the future, a testament to the fruitful nature of their professional relationship.
