SPW Bolivia

15/05/2026

14/05/2026

Prader-Willi syndrome is often misunderstood, and one of the most common misconceptions is that it’s caused by “bad parenting” or a lack of discipline.

That simply isn’t true.

PWS is a rare genetic condition that affects appetite regulation, growth and behaviour.

Families don’t cause it and parenting style doesn’t create it.

What families do instead is step into a world that requires constant awareness, structure and medical understanding just to keep their child safe and well.

Behind every diagnosis is a family doing their best in a system that often doesn’t fully understand what they’re facing.

Let’s replace judgment with understanding.

14/05/2026

DETRÁS DE CADA DIAGNÓSTICO DEL SPW, EXISTE UNA PERSONA COMO ANGELO CON SUEÑOS, CAPACIDADES, FORTALEZAS Y UNA FAMILIA QUE ACOMPAÑA CON AMOR INMENSO.

Gracias Carina Giménez, gracias Angelo! Por sumarse a la campaña y ser parte .
Y tus logros son?.
Tus desafíos?
Seguramente son muchos comparte y difunde en el mes de SPW.
www.praderwilliar.com.ar

13/05/2026

POR FAVOR TOMAR EN CUENTA:
NOS HACKEARON EL WATSAP, AHORA TENEMOS UN NUEVO NÚMERO DE CONTACTO:

(591) 64037061

* SPW BOLIVIA, NO HACE NINGUNA CAMPAÑA PARA RECAUDAR FONDOS, NI PIDE NINGUNA CONTRIBUCIÓN.

COMO ORGANIZACIÓN SIN FINES DE LUCRO, NUESTRO OBJETIVO SE LIMITA A SOCIALIZAR INFORMACIÓN SOBRE EL SPW Y HACER VISIBLE ESTA ENFERMEDAD POCO FRECUENTE (EPOF).

12/05/2026

LA FOTOGRAFÍA DE LOUIS NOS RECUERDA QUE DETRÁS DEL SPW HAY GUERREROS VALIOSOS, CAPACES DE DAR AMOR, APRENDER Y SORPRENDERNOS CADA DÍA CON LOS LOGROS QUE PUEDEN ALCANZAR Y QUE NINGUNA CONDICIÓN DEFINE EL VALOR DE UNA PERSONA.

May is Prader-Willi Syndrome Awareness Month! To celebrate, and honor our loved ones who are living and achieving amidst the challenges of the syndrome, I am featuring wonderful individuals every day this month!

This is Louis! He is 14 and lives in England. :-)

12/05/2026

COMPARTIMOS EXPERIENCIAS REALES COMO LA DE AURORA PARA VISIBILIZAR, INFORMAR Y CONSTRUIR UNA SOCIEDAD MÁS EMPÁTICA E INCLUSIVA.

12/05/2026

CONOCER PARTICULARIDADES DEL SPW, PERMITIRÁ ACTUAR CON PREVENCIÓN, EMPATÍA Y VIGILANCIA OPORTUNA.
DETRÁS DE CADA APARENTE "FORTALEZA ANTE EL DOLOR", EXISTE UNA CONDICIÓN MUY ESPECIAL QUE REQUIERE ATENCIÓN Y ACOMPAÑAMIENTO PERMANENTE.

PWS AND PAIN

People with PWS have a high pain threshold. This is another characteristic caused by a flaw in the hypothalamus, the part of the brain that controls and regulates many things in the body.

This is really tricky for parents, carers and medical professionals. Parents and carers, because they need to keep a close eye on their child as it’s possible the child could be injured and not realise it, and depending on the child’s age, the double whammy of not being able to verbalise or explain it.

Medical professionals would have to consider many different options as to what is going on, factoring in that they don’t know/can’t tell how severe the pain is, or perhaps even where it is.

"This high tolerance for pain can be potentially dangerous. For example, a serious condition such as appendicitis would cause severe pain in most people, but may pass unnoticed or be a minor upset for someone with Prader-Willi syndrome. "(Source: www.nhs.uk)

Join us throughout the month of May, and especially on Friday 15th May right here on this page where we will see all around the world Go Orange for PWS!
For more information: pwsavic.org.au