Welcome to the IPWSO RU-vid channel! We're here with lots of video resources about Prader-Willi syndrome (PWS) for you to use as medical professionals, professional caregivers, allied healthcare workers, families and people with PWS.
Our vision is of a world where people with PWS and their families receive the services and support they need to fulfil their potential and achieve their goals. We work to unite the global PWS community to collectively find solutions to the challenges of the syndrome and to support and advocate for people with PWS and their families, PWS associations, and professionals who work with people with PWS.
Prader-Willi syndrome is a complex and rare neurodevelopmental condition. There is no cure for PWS but a supportive and empathetic environment with tailored care and treatment can reduce many of the challenges.
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Thanks for reaching out to us. I hope you're well. If you need any support through the testing process, do contact our advice service, ipwso.org/how-we-can-help/advice-service/ where can help provide information for you, your family and your professional health workers. take care,
Can an adult person only get it as a child or can the person who is an adult just start getting PWS? I am always hungry; I take meds for bipolar disorders and most times I eat cake and custard and other food; but I feel like cake and custard helps me to calm down; but most of the time I get this hunger pains; and cannot sleep or concentrate when I get that feeling
Hi, PWS is present from birth. Sometimes people get diagnosed later in life, but the signs and symptoms would always have been there. You can find out more about diagnosis on our website: ipwso.org/information-for-medical-professionals/diagnosis/
It can be things like verbal outbursts, physical violence, meltdowns, self-harm. It can happen sometimes when communication breaks down or where there is inconsistency in a particular routine or access to food, something that might trigger anxiety in the person with PWS.
My son is a patient PWS . He is 8 years old. In Thailand, there was no information about this disease for mothers like me to study. The doctor here made me accept that my child must leave me. My child must die. But I don't like this idea. I believe my child needs to live longer.
I am very sorry to hear the doctor said this. There is information and support available and the future is very positive. We have an active PWS group in Thailand, please contact the office for the details: office@ipwso.org
Hi, please contact the Indian Prader-Willi Syndrome Association, they have lots of information and support: www.ipwsa.com/ You are also welcome to ask our experts for advice using this form: ipwso.org/how-we-can-help/ask-a-professional/
I believe my daughter, whom is now nearly 27years old. Has Pradar Willi - Which has by now already caused other Health Issues! We live in London... Do you have any advice for how I may get a proper diagnosis, to get the help she so obviously is in need of. Kind regards
