(Press-News.org) 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.
END
The untold story of life with Prader-Willi syndrome - according to the siblings who live it
2026-01-07
ELSE PRESS RELEASES FROM THIS DATE:
How the parasite that ‘gave up sex’ found more hosts – and why its victory won’t last
2026-01-06
Australian researchers have uncovered how a particular strain of a diarrhoea-causing parasite managed to infect more animal species, offering new insights into how parasitic infections emerge and spread to people.
The WEHI-led study has revealed a genetic shortcut that may help Giardia duodenalis and many other parasites jump to new hosts at the cost of long-term survival. The findings may also help explain how parasites evolve drug resistance, with implications for treatment strategies worldwide.
Understanding these dynamics could inform public health surveillance and guide efforts to anticipate zoonotic ...
When is it time to jump? The boiling frog problem of AI use in physics education
2026-01-06
WASHINGTON, Jan. 6, 2026 — Generative AI is becoming ubiquitous in everyday life. Large language models like ChatGPT can help answer questions, write emails, and solve problems at seemingly lightning speed, pulling from enormous datasets to engage in conversations with their users. Generative AI tools are increasingly used in classrooms, too, sometimes to supplement learning and sometimes to cut corners.
Because of this, many teachers have expressed concerns about this powerful tool’s impact on student learning and development. In The Physics Teacher, a journal co-published by AIP Publishing and the American Association of Physics Teachers, a physics professor-turned-AI-researcher ...
Twitter data reveals partisan divide in understanding why pollen season's getting worse
2026-01-06
Two things are clear from a University of Michigan analysis of nearly 200,000 Twitter posts between 2012 and 2022.
One, people are really good at identifying peak pollen season: The largest volume of tweets about pollen often lined up with pollen counters hitting their biggest numbers. And two, liberal users on Twitter were more likely than conservatives to ascribe shifting pollen seasons over the years to climate change.
"There is a partisan gap in how we perceive the pollen seasons that are very relevant to our day-to-day life and even our health," said Yiluan Song, the lead author of the new report in ...
AI is quick but risky for updating old software
2026-01-06
At first glance, artificial intelligence looks like a software developer’s dream. A recent McKinsey & Company report found that programmers generated code up to 45% faster with the help of generative AI.
But if it’s not used strategically, AI can become a developer’s nightmare. So says Edward Anderson Jr., professor of information, risk, and operations management and Betty and Glenn Mortimer Centennial Professor in Business at Texas McCombs.
The problem arises when AI ...
Revolutionizing biosecurity: new multi-omics framework to transform invasive species management
2026-01-06
Beijing, China — Biological invasion has become one of the most significant drivers of global ecological disruption, causing billions of dollars in economic losses annually. Yet, for decades, our response to these "alien" species has been largely reactive-acting only after a species has already established itself and caused damage.
In a major review published in the journal Biological Diversity, Professor Aibin Zhan from the Research Center for Eco - Environmental Sciences, Chinese Academy of Sciences, proposes a paradigm shift. The study introduces a "proactive, predictive, and integrative" framework driven by multi - omics technologies, offering a high - resolution ...
From ancient herb to modern medicine: new review unveils the multi-targeted healing potential of Borago officinalis
2026-01-06
LUCKNOW, India — For centuries, Borago officinalis - commonly known as Borage or the Starflower - has been a staple of traditional medicine. Now, a comprehensive review published in the journal Biological Diversity reveals the scientific "blueprint" behind this plant's diverse therapeutic effects, positioning it as a powerful candidate for modern drug development.
The study, led by researchers at the Department of Pharmacology, Integral University, provides an exhaustive analysis of how Borage interacts with the human body at a molecular level. By synthesizing data from both preclinical trials and human clinical ...
Building a global scientific community: Biological Diversity Journal announces dual recruitment of Editorial Board and Youth Editorial Board members
2026-01-06
Date: January 6, 2026
Source: Editorial Office of Biological Diversity
Contact: bd.admin@scbg.ac.cn
Biological Diversity, a premier international journal dedicated to the holistic study of life on Earth, has officially launched its global recruitment drive for both the Editorial Board (EB) and the Youth Editorial Board (YEB).
To address the complexity of the global biodiversity crisis, the journal is seeking experts across a systematic spectrum of disciplines. This recruitment aims to create a "dual - tier" leadership structure-combining the strategic wisdom of established world - class scientists with the innovative energy ...
Microbes that break down antibiotics help protect ecosystems under drug pollution
2026-01-06
Antibiotics that escape into the environment are widely recognized as a growing threat to ecosystems, wastewater treatment performance, and the spread of antimicrobial resistance. A new study shows that certain microbes can act as community protectors by breaking down antibiotics and stabilizing entire microbial ecosystems, offering a new way to rethink environmental risk assessment and pollution management.
Researchers investigated how microbial communities respond to sulfamethoxazole, a commonly detected antibiotic in wastewater and natural waters. Their findings reveal that the ability of a community to degrade antibiotics can be more important than the antibiotic ...
Smart biochar that remembers pollutants offers a new way to clean water and recycle biomass
2026-01-06
Scientists have combined molecular imprinting technology with biochar to create materials that can recognize and capture specific molecules with remarkable precision. Biochar is a porous carbon material made by heating biomass such as crop residues in low-oxygen conditions, and is already valued for its low cost, large surface area, and environmental friendliness.
Molecular imprinting works by “teaching” a polymer to remember the shape and chemical features of a target molecule, then locking that memory into tiny ...
Rice genes matter more than domestication in shaping plant microbiomes
2026-01-06
Rice feeds more than half of the world’s population, but the tiny microbes living on and around rice plants may be just as important as the crop itself. A new study reveals that the specific genetic identity of a rice plant plays a stronger role than whether it is wild or domesticated in determining which microbes it hosts and how those microbes function.
The research, published in Agricultural Ecology and Environment, shows that differences among rice genotypes strongly shape microbial communities in both the soil surrounding roots, known as the rhizosphere, and on leaf surfaces, known as the phyllosphere. ...