This World Down Syndrome Day we are excited to announce a new partnership between the Down’s Syndrome Research Foundation UK and the London School of Hygiene & Tropical Medicine to investigate the menstrual health-related experiences of adolescents with Down Syndrome in the UK.

The study, led by Dr Katie Greenland Assistant Professor, will generate important evidence on the unmet menstrual-related requirements and identify opportunities for interventions to improve the menstrual health of people with Down syndrome in the UK. Details of how to participate in this study will be forthcoming for carers and adolescents aged 10-19 years.

The study aims to shed light on the menstrual health-related experiences of adolescents with Down syndrome, a topic that has received little attention in the health research community to date. Through comprehensive online surveys and in-depth interviews with adolescents with Down syndrome and their caregivers, the project seeks to uncover the unique challenges and needs of these young individuals.

“I am so glad this complex aspect of life is being researched.
It is important for Health Care Professionals to understand the challenges people with Down’s syndrome and their families face regarding menstruation and its management”
L (mum to daughter with DS and Autism)

Why Is This Important?

People with learning disabilities experience a wide range of health inequities, and menstrual health is no exception. The well-being of adolescents during their menstrual cycle impacts not only their physical health but also their schooling, mental and social well-being. Despite its importance, there is a stark lack of evidence and guidance available to support individuals with Down syndrome and their caregivers or doctors in managing menstrual health well.

The team will include experts Sarah Polack, Associate Professor in Disability Research at the International Centre for Evidence in Disability (ICED) at LSHTM and Dr Jane Wilbur, Assistant Professor at the International Centre for Evidence in Disability (ICED) at the LSHTM, focusing on disability and water, sanitation and hygiene (WASH).

Sarah Pollock has a wealth of experience at the discovering the health experiences and needs of those with disabilities, critically with those with living experience at the heart of her research methods.  Dr Wilbur has research expertise in the area of menstrual health in those with learning disabilities developing the Bishesta campaign (in Nepal) and the Veivanua campaign for Vanuatu’s humanitarian responses.

This partnership also marks a significant step forward in our commitment to supporting underserved communities and addressing health inequities faced by individuals with learning disabilities.

Stay Tuned

We invite you to follow our journey as we embark on this vital research project. Stay tuned to our blog and social media channels for updates, insights, and stories from the field. Together, we can create a more inclusive and equitable future for menstrual health care.

Thank you for your continued support of Down’s Syndrome Research Foundation UK. It is through collaborations like these that we can make a real difference in the lives of those we serve.