IPWSO Health ECHO® Videos

Prof. Dr. Ralf Stücker Medical Director and Chief of Pediatric Orthopedic Department, Altonaer Kinderkrankenhaus, Hamburg, Germany
“Management of orthopaedics in Prader-Willi-syndrome”

Presented at the IPWSO Health ECHO on December 7, 2021. This presentation focuses on spinal deformities and helped us to understand natural history of scoliosis in Prader-Willi-Syndrome, the possibilities in growth guiding surgery in young children with PWS, and complications which may arise in the management of scoliosis.

The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.

Norbert Hödebeck-Stuntebeck, Psychologist, Diakonische Stifung Wittekindshof, Germany
“Socialisation and Communication in PWS”

Presented at the IPWSO Health ECHO on November 9, 2021. In this session we considered the communication of the person with Prader-Willi syndrome, both verbal and nonverbal, within a complex communication environment and how people may arrive at different understandings within that environment. The 4 ears model can help us to address complexity of meaning between the factual, the interpersonal, the self-revelation, and the appeal forms of communication for people with PWS.

The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.

Maria Guilia Marini, Healthcare Area, Fondazione ISTUD, Italy
“Caring and Living with Prader-Willi syndrome in Italy”

Presented at the IPWSO Health ECHO on October 12, 2021, Caring and Living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentred narrative medicine research. In this session we considered different ideas around a narrative medicine approach as being either tools of understanding or tools of education, and reflected on the perspectives of the people with Prader-Will syndrome, both children and adults, and the perspectives of family, caregivers and health professionals.

The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.

Georgina Loughnan, Prader-Willi Syndrome Clinic, Royal Prince Alfred Hospital, Sydney, Australia
“PART 2 of Diet and Exercise and the Prevention of Obesity: The Power of Exercise for People with PWS”

Presented at the IPWSO Health ECHO on September 14, 2021. In this session we learned that exercise is essential for all people with PWS – not just for weight management, and that while growth hormone is a great treatment for people with PWS, it does not negate the need for a healthy lifestyle.

The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.

Dr Constanze Lämmer, Senior Physician, Children’s Hospital, St. Bernward Hospital, Hildesheim, Germany
“PART 1 of Diet and Exercise and the Prevention of Obesity: Nutrition in PWS”

Presented at the IPWSO Health ECHO on September 14, 2021. In this session we learned that a healthy meal plan is essential for more than just a healthy weight, and that while growth hormone is a great treatment for people with PWS, it does not negate the need for a healthy lifestyle.

The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.

Brendon Yee, Associate Professor, Respiratory and Sleep Physician, Royal Prince Alfred Hospital, Sydney, Australia
“Sleep and respiratory manifestations of PWS: an adult perspective”

Presented at the IPWSO Health ECHO on July 13, 2021. In this session we learned how to recognise the common manifestations of sleep and respiratory disorders that may occur in Prader-Willi syndrome and management options for these disorders.

The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.

Prof Tony Holland, Emeritus Professor Department of Psychiatry, University of Cambridge and Consultant Psychiatrist, UK, and President of IPWSO                                                                    “Behaviour and Mental Health”

Presented at the IPWSO Health ECHO on June 15, 2021. In this session we gained an understanding of the nature and characteristics of the behavioural and mental health conditions that impact on the mental health of people with PWS; the possible causal mechanisms and biological/environmental interactions that result in an increased risk for mental ill-health and; approaches to prevention, management, and treatment.
The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.

See also A Primer for Psychiatrists, written by Janice L. Forster MD and Linda M. Gourash MD of the Pittsburgh Partnership and linked to on our website here with their permission.

Dr Tony Goldstone, Clinical Senior Lecturer and Consultant Endocrinologist, Imperial College London, UK
“How We Understand Hyperphagia in PWS”

Presented at the IPWSO Health ECHO on May 18, 2021. In this session we gained an understanding of the nature of hyperphagia and overeating in PWS, the importance of control of the food environment in management of hyperphagia in PWS, and the current situation regarding potential new treatments for hyperphagia in PWS. The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.

Dr Charlotte Höybye, Senior physician, Associate professor, Karolinska University Hospital, Sweden
“Prader-Willi syndrome: Adolescent and Adult Endocrinology”

Presented at the IPWSO Health ECHO on April 20, 2021. In this session we learned how PWS is associated with documented hormone deficiencies which should be monitored and treated when indicated, and that hormone therapy offers an opportunity to reduce some of the adverse consequences of PWS. Please note some pictures have been removed for privacy. The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.

Dr Constanze Lämmer, Senior Physician, Children’s Hospital, St. Bernward Hospital, Hildesheim, Germany
“The Care of the Infant with PWS”

Presented at the IPWSO Health ECHO on March 16, 2021. This talk covers the importance of a holistic approach; Nutrition; Physiotherapy; Early intervention; Endocrine aspects; Orthopedic problems; Additional health issues. The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.  

Dr Kate Baker, Cambridge University Hospitals, University of Cambridge
“Prader-Willi syndrome: Genetic diagnosis”

PART 2 of Dr Kate Baker’s presentation, “Prader-Willi syndrome: Clinical presentations and genetic diagnosis” presented at the IPWSO Health ECHO on February 16, 2021. This part of the talk cover areas including different genetic forms of Prader-Willi syndrome; the genetic diagnostic pathway; the particular genetic sub types; the importance of genetics in a firm diagnosis. The PDF of this presentation is available here. To read the Q&A following the session please refer to the abridged abstract summary.  

Dr Kate Baker, Cambridge University Hospitals, University of Cambridge
“Prader-Willi syndrome: Clinical presentations”

PART 1 of Dr Kate Baker’s presentation, “Prader-Willi syndrome: Clinical presentations and genetic diagnosis” presented at the IPWSO Health ECHO on February 16, 2021. This part of the talk covers areas including clinical features of PWS; the evolution of PWS symptoms over time; evidence of endocrine deficiencies; the emergence of more psychiatric and psychological problems. The PDF of this presentation is available here. To read the Q&A following the session please refer to the abridged abstract summary.  

Tony Holland, President, IPWSO
“Introduction to Project ECHO®”

IPWSO President Tony Holland speaks about the objectives of Project ECHO as part of the first IPWSO Health ECHO on February 16, 2021.