At another PWS workshop in Peru, supported by IPWSO, some of their learnings are as follows:
|Mariona, on top of Machu Piccu!|
We can do it!
From the first workshop about integrated management of PWS in Peru, hosted in Lima, November 7-8th, 2014, we can extract some key points:
- Early diagnois: as Fanny Cortés (from Chile) said, early diagnosis of PWS is the base necessary to allow all management and education necessary to improve the quality of live of people with PWS and their families. Of course, PWS must not be confused with other illnesses with similar symptoms.
- Water: keeping in mind the risks of water intoxication. Water was the second most repeated keyword of the meeting (after "Síndrome de Prader-Willi"): simply avoiding flavoured drinks, infusions and juices, limiting milk intake, and replacing most of liquid intake by water, we can improve body hydration and reduce calories intake. Of course, a standard healthy diet (reducing amounts) must follow too. Let's all repeat Myriam Royo's (from Spain) song: AGUA, AGUA, AGUA! (WATER, WATER, WATER) (just up to 8 cups a day!).
- Physical activity: from Cuba, Sady Rodriguez showed us how it is possible for people with PWS to be active. Physical activity is not forbidden for them, neither doing sport, walking, playing, dancing, even Special Olympics are possible for people with PWS!
- Team: from Garraham Hospital (from Buenos Aires, Argentina), Maria Torrado shared with Peruvian professionals and families how too develop a multidisciplinary team which works amazingly to cover most of PWS medical needs.
- Easy: improving quality of live is not so difficult. Vivian Leske (from Argentina) stressed the importance of polysomnography to diagnose sleeping apnoea, showing that it is non-invasive test, and explaining sleep apnoea, its types, its symptoms, its consequences and how to treat it.
- Skills: Karina Abraldes, from Argentina and Garraham Hospital, too, exposed the results of their research about behavioural phenotype on different types of PWS and how to take profit of all their skills.
- Always possible: Carolina Cárdenas (from Colombia) talked about a very difficult case (because of a poor social environment) and how with a bit of attention (yes, but with a lot of work) the situation may improve amazingly.
- Secure environment: Mariona Nadal (from Spain), reminded (about) the importance of rules to establish an environment where people with PWS may feel comfortable and improve their behaviour and well-being, along with this of their families'.
- Associations: that meeting will be, by sure, the seed of the future Peruvian PWS association, with the leading of their delegates Rosalva Espino (parent) and Alberto Teruya (professional) and the support of many hopeful families.
We hope this event will make the difference for Peruvian people with PWS (already diagnosed or not yet, already born or not yet), as past IPWSO national meetings had make the difference in other countries.
Because "We can do it" with YOU, you can help..