The untold story of life with Prader-Willi syndrome - according to the siblings who live it

New research from the University of East Anglia (UK) reveals the hidden struggles experienced by the brothers and sisters of people with Prader-Willi syndrome.

Prader-Willi syndrome is a rare genetic disorder that causes growth and learning challenges and requires lifelong care to prevent serious health issues. It is known for causing constant hunger, which can lead to over-eating and obesity.

But until now, little has been known about how the condition impacts families.

A new study published today reveals the emotional challenges faced by siblings – including feelings of stress, loneliness and sadness.

Lead researcher Dr Meghana Wadnerkar Kamble from UEA’s School of Health Sciences, said: “Prader–Willi syndrome is a rare neurogenetic condition that causes constant hunger, complex behaviour and health challenges.

“We found that having a brother or sister with Prader-Willi syndrome can be hard.

“Many siblings feel stressed, lonely, and sometimes take on extra responsibilities at home. Family life often revolves around managing the condition, which can make things complicated.

“While some siblings develop resilience, most need more and better support.”

The team reviewed two decades of research on siblings of people with Prader-Willi syndrome. Out of thousands of articles published between 2000 and 2024, only seven addressed siblings’ experiences.

“We summarised findings from these studies and analysed what they said about emotions, family relationships, and coping strategies,” said Dr Wadnerkar Kamble. “This gave us an insight into what life is like for these siblings.

“We found that siblings were experiencing emotional fatigue because of the unpredictability of their brother or sister with Prader-Willi syndrome. It meant they always had to be prepared for unexpected situations.

“In many cases siblings were thrown into the role of being a caregiver.

“They also shared feelings of despair and loneliness and worried about upsetting their parents by making demands on their time.

“Family relationships were often strained and emotionally charged, with frequent arguments and disrupted routines. Siblings often felt unable to communicate openly with their parents. And everyday activities like parties and eating out were impossible.

“On a more positive note, some siblings developed resilience in the face of adversity,” she added.

Siblings often tried to manage their brother or sister’s behaviour and hunger by keeping them busy with activities like puzzles and jigsaws. The study also found that short breaks - when the child with Prader-Willi syndrome was away from home - gave other siblings valuable relief and helped them cope better.

The researchers say that a sibling’s experience depends heavily on the wider family environment. Because of this, they recommend a family-centred approach in both research and support services. The findings echo further research from the same team, underscoring the need for a lifelong approach and personalised support for siblings as their needs evolve over time.

Dr Wadnerkar Kamble said: “Siblings play a huge role in family life and sometimes even help care for their brother or sister. In the context of disability in the family, there is very little support for siblings. Our research shows why listening to siblings and creating family-focused support is essential for wellbeing in rare conditions such as Prader-Willi syndrome.

“Future research should include more detailed interviews and gather perspectives from the whole family, including the person with Prader-Willi syndrome,” she added.

This research was led by the University of East Anglia in collaboration with the Prada-Willi Syndrome Association UK, who funded the study.

‘Experiences and support needs of siblings of individuals with Prader-Willi Syndrome: An integrative systematic review’ is published in the Journal of Applied Research in Intellectual Disabilities (JARID).

ENDS   

NOTES TO EDITORS

1/ For more information or to request an interview, please contact the UEA Communications office by emailing communications@uea.ac.uk.

Dr Meghana Wadnerkar Kamble - M.Kamble@uea.ac.uk

2/ A copy of the research paper is available via the following Dropbox link: https://www.dropbox.com/scl/fo/cjhsjbw13q1fls4zglvg3/AEm_yZySHMmjO_Bn8HgTHbE?rlkey=xmqtjkg0397nmb0akt7qfq37b&st=loyd8a9m&dl=0

3/ The University of East Anglia (UEA) is a UK Top 25 university for research quality (Times Higher Education Rankings 2026) and UK 26th in the Complete University Guide. It also ranks in the World Top 60 (QS World Rankings for Sustainability 2025) and the World Top 20 for reduced inequalities and World Top 200 (Times Higher Education Impact Rankings 2025). Known for its world-leading research and good student experience, its 360-acre campus has won nine Green Flag awards in a row for its high environmental standards. The University is a leading member of Norwich Research Park, one of Europe’s biggest concentrations of researchers in the fields of environment, health and plant science. www.uea.ac.uk.