PWS in Cuba

Everything started 3 years ago when a doctor from Cuba contacted IPWSO through his brother in law who lives in Sweden. He wrote to us saying he needed help to confirm the clinical diagnosis made to his 4 year old daugther, as this was not possible to be done in Cuba. The methylation test confirmed the diagnosis and that his daughter had UPD. The doctor immediately asked for information and educational material in Spanish, which we provided, and expressed the wish to participate to a PWS Scientific Conference somewhere in Europe to learn more.


IPWSO invited him to join the International PWS Conference in Taiwan in May 2010 instead and covered all his travel costs, while Cuban authorities and especially the Ministry of Health of his country helped him a lot to get the passport and the permission to leave Cuba. As soon as he returned home, so enthusiastic and full of information, he organised a 1st workshop for professionals and parents in his own town, hosted in a room of Caritas, as this Catholic organisation is very active in assisting disabled people throughout the country.

The young doctor, and his wife, who is a psychologist specialising in teaching children with disabilities, have agreed to represent IPWSO, and so Cuba became a member of our International Organisation. They asked Caritas to help them find cases throughout the country, spreading the voice to their branches connected with the various parish churches. In a short time they found 15 patients and especially many doctors and professionals interested to know more about this syndrome.

Once Caritas offered to host a National Workshop open to professionals and parents and to help families financially to join La Habana, we were contacted again for help to find professional speakers in the Spanish language from Latin America and Europe. The key speakers accepted the invitation with enthusiasm and covered their own travel expenses. We owe much to them: Dr. Moris Angulo (El Salvador-U.S.A.), Dr. Maria Del Valle Torrado, Dr. Hugo Serdloff, Karina Abraldes (Argentina), Irune Achutegui (Spain-Italy), Dr. Fanny Cortes (Chile). They covered all important aspects of the syndrome such as genetics, endocrinology, pediatrics, psychology and psychiatrics.

Local parents appreciated also the presence of parents coming from other Spanish speaking countries representing IPWSO network: Luis Barrios and Mayra Urizar from Guatemala, Julia Bonelly from Dominican Republic, Fernando Briones and Mariona from Spain and Giorgio Fornasier from Italy. All scientific speakers modified their own presentations to be understood by parents and this was highly appreciated by Cuban professionals too, because they learned how to approach parents with scientific and medical issues in an easier way. The priority was given to parents, to their questions and especially sharing experiences. During breaks and meals local doctors had the opportunity to talk about scientific details with foreign speakers directly.

The 2nd Workshop on Prader Willi Syndrome in Cuba was held from 27 until 29 April 2012 at the Sacaerdotal House in the Capital La Habana, under the precious umbrella and organisation of Caritas Cuba. Everyone slept at the same house where the Conference was held and had meals at its restaurant, so there was plenty of time to stay together till late at night. The meeting room had equipment for video presentation and became more a sort of a family sitting room, than a Congress.

Looking at the audience, you could not distinguish who were parents and who were professionals. They all participated by heart, laughed and cried together. It was amazing to realise that 3 years ago there was almost no knowledge about PWS in Cuba and now there were 63 people attending the workshop: 6 professionals from abroad, 32 professionals from Cuba, 6 parents from abroad, 15 parents from Cuba, 4 volunteers of Caritas Cuba

The picture shows the smiling group that participated to the Workshop and among them there were parents who were visiting La Habana for the first time and they did not know each other.

It was touching to meet the oldest patient with PWS in Cuba, a 42 years old woman who was diagnosed by Dr. Prader himself when visiting Cuba years ago. Everyone cried listening to the mother of Manolito, a 19 years old boy who died some months ago. Manolito’s mother came to honour the memory of her son with her presence and participated in the discussion and sharing. At the end she told everybody: “Don't miss the unique and precious opportunity you had and what you learned at this fantastic meeting. Work hard and let other Cuban children with PWS live!”


(contributed by Giorgio Fornasier, CE of IPWSO)