Too hot, too cold: Abnormal temperature sensation
Many people with PWS do not feel warm and cold in the way others do. This is a result of the hypothalamic disturbance present in people living with PWS. We might see the person looking cold with blue lips and ice cold hands without complaining, or red in the face and sweating, without saying they feel too hot.
Clothing
People with PWS may need help to learn which clothes are appropriate for the weather or the situation. It is helpful to explain the role of different clothes so that the person can understand and to pre-empt any arguments that might occur once the person has already decided on their outfit for the day.
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- Separate clothes into types and explain their purpose:
- clothes for wintertime or cold weather: long sleeved t-shirts, sweaters, trousers, shoes etc.
- clothes for summertime or warm weather: short trousers, summer dresses, short sleeved t-shirts, light sweaters, sun hat etc.
- Separate clothes into types and explain their purpose:
Baths and showers
Many people with PWS enjoy long hot, or even cold baths and showers. They may need help to decide on the length of time to stay in the water and how to set the temperature.
You could support the person by:
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- Giving them a timer to limit how long they are under the shower or in the bathtub.
- Helping them to check the temperature of the water.
- Applying temperature limits to the hot water supply.
- Explaining about the costs of clean water and the costs of warming up the water.
- People with PWS can also enjoy swimming in cold water – especially if the outside temperature is very hot. You can support them to make good decisions about where to swim and for how long.
Risks associated with high and low temperatures
People with PWS are not able to express pain or discomfort in the way that others do and so need support in managing the risks associated with high and low temperatures.
Too hot
Normally when in a hot environment, outdoors or indoors, the small blood vessels in your skin will dilate so that the body can evaporate warmth and you will sweat. In the water you will not notice sweat, but the skin becomes warm.
If you dilate the small vessels in your skin through being in extremely hot water for a long time, there is a risk you will faint (as too much of your blood goes to the skin). This can occur with a very hot bath or shower. So, being in hot water for a long time is a bad idea.
It is important to maintain the bathing temperature of water at 37-38° Celsius (98 – 101° Fahrenheit) for children and 40-45° Celsius (104 – 113° Fahrenheit), for adults. If the water is above 45 -50° Celsius (104 – 122° Fahrenheit) for adults, there is a risk of burning the skin. The sores that develop can become infected, and these will heal slowily, especially if you are overweight.
So, it is recommended to only bathe or shower in warm water, using the temperature guide above, for a maximum of 10 minutes.
It’s the same with saunas. It is very hot in a sauna, and you should not stay there longer than 10 minutes.
Bedding may also pose an issue: as an example, one woman with PWS, was known to use two very warm eiderdowns on her bed during summer, when the room temperature was 30° Celsius. The eiderdowns could only be removed by the carer once she had fallen asleep.
Too cold
If it is cold, the blood vessels will contract to secure and keep the inner organs warm (heart, lungs, brain). Becoming too cold for a prolonged period can lead to hypothermia, which will occur if a person is exposed to temperatures below 10° Celsius or in cold water of less than 20° Celsius for a long time.
The first signs usually include feeling cold and uncontrollable shivering. If the person becomes severely hypothermic, shivering usually stops and they feel exhausted. The skin may appear pale or blue. They may become confused, unsteady on their feet, and start to slur their speech.
In sever hypothermia the heart rate and breathing slows down and the person may fall into a coma, resulting in eventual death if not treated. This sadly, happened to a young man with PWS who ventured into the snow wearing only shorts and a short-sleeved shirt and inappropriate footwear.
Temperature and Fever
People with PWS may not be able to communicate feeling sick or be able to tell you where they have pain. A change in their level of alertness or behaviour may be the first indicators that the person is ill. Not wanting to eat a planned meal may also be a warning sign of illness or pain.
We also know that the opposite reaction can occur, the person speaks about pain but there is no apparent physical cause.
For example when a person is stressed they may talk about feeling feverish, or headaches etc, but you cannot find any physical symptoms or reasons for it. If possible, try to reduce the stress and ask a healthcare professional for support.
Thermal dysregulation or temperature regulation is unpredictable in people with PWS (you need to be vigilant about both hyperthermia and hypothermia) and there may be a lack of febrile response even in the case of a severe infection. High temperature or fever of unknown origin may occur in both children and adults with PWS. Fevers, if not treated early can escalate to cause severe illness requiring intensive care support. People with PWS can also present with an evident infection, but no fever. This situation can lead to the medical response underestimating the problem, especially when the person complains of no pain or discomfort, there is then the risk that the infection can develop into a severe illness.
It is important for medical professionals to be aware of the thermal dysregulation common to people with PWS, to ensure thorough investigations are completed if a person is unwell.
Parents tell us:
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- My daughter Sophie is 19, and very high functioning. Even so, she comes up with things that prove that no matter how high her IQ, her brain works differently than most. Every morning, Sophie checks the outside temperature before she gets dressed, so she is appropriate for the weather. This morning, we skipped church and hung around in our jammies (pyjamas) till almost noon. She is growing tomato and pepper plants for her garden, and because our backyard is fenced in and pretty isolated, I let her go do her gardening in her pyjamas too. My hubby (husband) decided it would be a nice day for a drive in the country, so when she was done, I asked her to get dressed so we could go for a ride, which she loves to do. It was taking her forever, so I asked what she was doing – she said she was waiting for her phone to boot so she could check the temperature before she got dressed!! (She had just spent half an hour outside). I said you just came in – you know what the weather is like. And she said I CAN’T GET DRESSED WITHOUT THE TEMPERATURE!! We waited…
- James checks the weather too – throughout the day. But if he dresses once, he cannot change. And if he gets dressed later in the day, he wants to sleep in the clothes. I guess he feels they didn’t get worn enough to get washed and can’t put worn clothes back into a drawer.
- Same here, Meghan checks the temperature on her phone every morning before getting dressed. And has to check for the town her school is in, which is not far from where we live.
Summary
Parents and caregivers need to support people living with PWS in dressing appropriately for the weather. Parents and caregivers must remain aware and vigilant about the person’s lack of body temperature changes in response to exertion and illness.
This article was written by IPWSO’s Famcare Board.
2022
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Sharing international knowledge among professional service providers throughout the world.
Paediatric Association of Nigeria - 57th Annual Scientific Conference
IPWSO was proud to support a dedicated PWS symposium at the 57th Annual Scientific Conference of the Paediatric Association of Nigeria (PAN) Conference held 21-23 January 2026 in Ogun State.
Famcare Board Member, Dr Elizabeth Oyenusi, presented on the clinical features, diagnosis, and management of PWS, while Dr Oluwakemi Ashubu shared the first genetically confirmed case of PWS in the country - an important milestone. The session attracted over 104 delegates and sparked a lively discussion.
IPWSO also hosted an exhbition table throughout the 3-day conference, distributing educational materials and engaging directly with healthcare professionals.
We are hugely grateful to Dr Oyenusi, Dr Ashubu and Dr Oladipo (Senior Registrar) for their support in making this educational oureach possible - helping to strengthen awareness and improve early diagnosis of PWS in Nigeria. Funding for this event was kindly provided by Friends of IPWSO (USA).
Global Newborn Society Inaugural Conference, Sweden
The Global Newborn Society’s 1st Conference took place in Uppsala and Stockholm, Sweden, from 2-4 November 2025, marking an exciting milestone for the organisation’s international community.
We were delighted that Dr Susanne Blichfeldt was invited to deliver a plenary lecture on behalf of IPWSO, titled “Neonatal Hypotonia: Clinical Features Seen in PWS That Can Help Differentiate It from Other Congenital Disorders with Similar Symptoms.”
The inaugural event brought together a diverse audience of physicians, nurses, and social care leaders from around the world. The programme was wide-ranging and stimulating, featuring cutting-edge discussions on newborn health, early diagnosis, and innovative care practices - setting a strong foundation for future collaboration within this growing global network.
ASPED 2025, Dubai, UAE
The 6th conference of the Arab Society for Paediatric Endocrinology and Diabetes was held in Dubai over two days on the 26th and 27th September 2025. IPWSO was invited to be a partner and to present at a session on PWS. The conference was attended by over 400 paediatric endocrinologists from more than 20 countries in the Middle East and North Africa. Charlotte Hoybye and Tony Holland attended and presented on behalf of IPWSO and Dr Sarah Ehtisham described her experience seeing patients with PWS in the United Arab Emirates. IPWSO hosted a stand for the whole conference.
In conversation many attendees reported seeing people with PWS and described the challenges they faced, particularly with the management of behaviour problems. Some felt nervous about starting growth hormone as they had had no experience prescribing it to infants with PWS.
Approximately 100 attendees joined the IPWSO mailing list and attendees were very keen to gain knowledge about PWS. Numerous memory sticks with information on PWS and printed material in English and Arabic were taken. Some attendees talked about establishing national or regional PWS Associations.
This was an extremely positive experience and hopefully attending this meeting has laid the groundwork for IPWSO to engage more fully in the Region in the future. We were very well looked after, and the organisers were excellent hosts.
EPNS 2025, Munich, Germany
Together with parents and representatives from the Prader-Willi-Syndrom Vereinigung Deutschland, we were proud to host a PWS exhibition stand at the 16th Congress of the European Paediatric Neurology Society, held in Munich from 8-14 July 2025. The event welcomed over 2,000 medical professionals from around the world.
We had the pleasure of engaging with attendees from Türkiye, Iraq, Palestine, Croatia, Moldova, the Philippines, Ukraine, North Macedonia, Kazakhstan, Armenia, and many local specialists.
Dr. Stefani Didt, Gesellschafter at Katholische Jugendfürsorge der Diözese Augsburg, kindly supported us at the stand and provided expert responses to clinical enquiries. We hope these international connections will contribute to raising awareness about IPWSO’s work, particularly in improving access to genetic testing in underserved regions.
We also highlighted the new treatment for hyperphagia and shared our recent publication, "Improving Mental Health and Well-being for People with PWS."
Sincere thanks to our colleagues from PWS Vereinigung Deutschland and to Dr. Didt for their invaluable support.
ESPE-ESE 2025, Copenhagen, Denmark
IPWSO was honoured to participate in the recent Joint Congress of the European Society for Paediatric Endocrinology (ESPE) and the European Society of Endocrinology (ESE), held in Copenhagen from 10–13 May 2025. This important event provided an invaluable opportunity to raise awareness of Prader-Willi syndrome (PWS) among a broad international medical audience.
IPWSO was represented by our CEO, Margaret Walker, along with Dr Charlotte Höybye from Sweden and Dr. Susanne Blichfeldt from Denmark—both esteemed members of IPWSO’s Clinical and Scientific Advisory Board.
Dr Blichfeldt noted that this congress is a major event in the clinical academic calendar and has a particular significance as it marks the first-ever joint meeting of these two prominent societies. Despite its European designation, the congress attracted participants from around the globe, including delegates from the Middle East, Africa, the United States, Japan, Australia, and New Zealand.
IPWSO’s educational booth was strategically positioned within the Patient Advisory Group area dedicated to rare disease organisations. As part of the programme, we were invited to deliver a 30-minute presentation during the Patient Voices Session. Dr Charlotte Höybye and Dr Susanne Blichfeldt presented on Prader-Willi syndrome (PWS), with a focus on genetics, endocrinology, and clinical manifestations. Our presentation, along with many others, was recorded and is now available on demand via the ESPE-ESE congress platform.
PWS was prominently featured throughout the congress. In a session on the transition of care for patients with rare diseases, Dr. Maithé Tauber (Toulouse, France) discussed the specific challenges associated with the transition period in PWS. She emphasized the need for multidisciplinary care and ongoing specialist follow-up in adulthood through dedicated PWS clinics.
Another session addressed medical and clinical management in both children and adults with PWS, again highlighting the critical importance of a smooth transition from paediatric to adult care and the role of specialised clinics. The session included an in-depth discussion on hyperphagia in PWS, exploring its profound impact on individuals and their families. Management strategies were reviewed, and a new medication, Vykat, was presented as a potential treatment for hyperphagia.
In addition, there was a strong presence of scientific posters on PWS from various countries, covering a wide range of topics such as hormonal therapies, genetic findings, ageing, and guidance for families. A total of 33 posters focused on PWS, reflecting a growing global interest and commitment to advancing knowledge and care in this area.
We were greatly encouraged by the high level of engagement and the visibility given to PWS throughout the congress. This increased awareness brings hope that more children will be diagnosed earlier and receive appropriate, specialised medical care from childhood through to adulthood.
ASPAE 2025, Abidjan, Côte d’Ivoire
After Yaounde (Cameroon 2023) and Alger (Algeria 2024), IPWSO was pleased to be present at the 16th Annual Congress of the African Society of Paediatric and Adolescent Endocrinology (ASPAE), at the invitation of Dr Kouamé Hervé Miconda, Programme Co-organiser. Prior to the main conference, IPWSO, in partnership with Dr Micondo, organised a dedicated PWS workshop which attracted 60 professionals - paediatricians, endocrinologists, doctors, students, nurses, and midwives.
MENA 2025 Abu Dhabi, UAE
The Middle East and North African (MENA) conference for Rare Diseases was held in Abu Dhabi, United Arab Emirates, between 17th and 20th April 2025. Tony Holland represented IPWSO at this meeting and presented a poster about our work. The conference was attended by clinicians, genetic councillors, scientists, and other health disciplines from across North Africa and the Middle East. The conference was in English as many clinicians in this part of the world are from elsewhere and not Arabic speakers. The conference was of a very high standard and ranged broadly across many rare genetically determined conditions as well as there also being discussions about how to develop services and how to seek approval for new treatments. Our poster was one of five that was selected as the best posters exhibited at the meeting. Tony said, "My experience of the conference was very positive and I am sure there are opportunities that can be built on. Being part of the endocrinology meeting, which is likely to be attended by endocrinologists from across the whole region, provides a wonderful opportunity to engage more fully with clinicians most likely to see people with PWS".
Kenya Paediatric Association Annual Scientific Conference, Monbassa, Kenya
Dr Menbere Kahssay and Dr Renson Mukhwana, Aga Khan University Hospital, Nairobi represented the Kenyan team and, together with Drs Constanze Laemmer and Dr Charlotte Höybye, managed the IPWSO educational booth at our first meeting in this region.
A dedicated session on PWS significantly raised awareness and knowledge about the syndrome among paediatricians and allied health professionals.
Dr Kahssay said, "We were able to have track and plenary session and four days interaction with the participants at the booth.
The PWS session focused on case experiences and regional differences in PWS management. Thanks to IPWSO’s support, Drs Charlotte Hoybye and Constanze Lammer joined as expert speakers, sharing their valuable experiences in managing PWS across the neonatal, childhood, and adult stages".
Dr Menbere Kahssay and Dr Renson Mukhwana presented genetically confirmed local cases, highlighting diagnostic challenges and treatment approaches.
Third Biennial Rare Diseases Conference, Rare X, Johannesburg, South Africa
Karin Clarke and Molelekeng Sethuntsa organised the IPWSO exhibition table at this event in Johannesburg from 14-17 February 2024. Molelekeng attended the conference and reported on the excellent discussions that focused on the challenges of early diagnosis, especially in Africa, centres of excellence, and ways that the Department of Health, WHO and RDI can improve detection and treatment of rare diseases.
6th RARE Summit 2023, Cambridge, UK
Tony Holland, President, and Agnes Hoctor, Communications and Membership Manager, represented IPWSO at the 6th RARE Summit organised by Cambridge Rare Disease Network on 12 October, 2023.
MetaECHO® 2023, Global Conference, Albuquerque, New Mexico
The 5th MetaECHO® Global Conference took place from September 18-21 in Albuquerque, New Mexico. It celebrated 20 years of ECHO programmes and brought together ECHO leaders, partner teams, government officials, funders, policy makers, and industry experts to share retrospective work and thoughts on the future of ECHO. Our President, Tony Holland, presented a paper on “A Global ECHO Programme for the Rare Disorder – PWS", based on IPWSO’s Project ECHO programme.
EPNS 2023, Prague, Czech Republic
The 15th European Paediatric Neurology Society Congress (EPNS) took place from 20-24 June. Tünde Liplin, PWS Hungary, and Hana Verichová, PWS Czechia, represented IPWSO. Twenty-two people from countries including Georgia, Israel, Lithuania, Turkey, Italy, Slovakia, Romania, Netherlands, Bosnia Herzegovina, Belgium, Argentina, Norway, Serbia, India, and Australia subscribed to the "Stay in touch with IPWSO!" contact list. Tünde reported that many people came to the stand just to inquire and chat, the majority of whom were hearing about IPWSO and our work for the first time.
ECE 2023, Istanbul, Turkey
The European Congress of Endocrinology (ECE) took place from 13-16 May. We hosted an information table and were represented by IPWSO advisers, Constanze Lämmer and Charlotte Höybye, and also our Communications and Membership Manager, Agnes Hoctor. We were pleased to be given the opportunity to present on IPWSO and PWS at the Hub Session. The most exciting and important element for us was that the Turkish location meant that delegates came from many countries in Middle East as well as Europe.
ASPAE 2023, Yaoundé, Cameroon
We hosted an educational booth and presented at the round table on Obesity at this important Endocrinology conference hosted by the African Society of Paediatric and Adolescent Endocrinology (ASPAE) from 9-10 February. Read our blog about our visit.
ECE 2021, Online
We hosted an educational booth and gave a presentation at the European Congress of Endocrinology in May 2021.
ESPE 2019, Vienna, Austria
We exhibited at the European Society of Paediatric Endocrinology (ESPE) Conference in Vienna, Austria, which took place in September 2019. Find out more in our blog.
ECE 2019, Lyon, France
We exhibited at the European Congress of Endocrinology in May 2019.
Dr Ashubu discussing IPWSO's educational materials with delegates at our booth.
IPWSO was honoured to be invited to present at the Global Newborn Society's Inaugural Conference.
Dr Sarah Ehtisham presenting at ASPED 2025 followed by a panel discussion.
Colleagues from PWS Vereinigung Deutschland help manage our PWS stand at EPNS 2025. Many thanks to all the parents and carers for their invaluable support!
Dr Charlotte Höybye (Sweden) and Dr. Susanne Blichfeldt (Denmark) presenting at the ESPE-ESE Patient Voices Session - May 2025
Dr Blichfeldt and Margaret Walker (CEO) managing our IPWSO educational booth.
François Besnier, IPWSO's Vice President, meeting some of our travel fellowship delegates at ASPAE 2025.
IPWSO's poster achieves top award!
Many thanks to Drs Constanze Laemmer, Menbere Kahssay, Charlotte Höybye and Renson Mukwana for all their support at KPA 2025.