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I am planning to have such Clinics here once in 4 months and the
next Clinic will be on 1 May 2015.
This is for your information. With kind regards,
Yours sincerely,
P. Raghupathy
In 2012 I participated to the first PWS Workshop at La Habana
in Cuba in May IPWSO organised in cooperation with Caritas
(Vatican). Everything started 3 years ago when a doctor from
Cuba, whose name is Loisel Bello, contacted IPWSO through his
brother in law who lives in Sweden. He wrote to me saying he
needed help to confirm the clinical diagnosis made to his 4 years
old daughter Gabriela, as this was not possible to be done in Cuba.
The methylation test confirmed the diagnosis and that Gabriela
had PWS caused by UPD. Loisel immediately asked for information
and educational material in Spanish we provided and expressed
the wish to participate to a PWS Scientific Conference somewhere
in Europe to learn more. We 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. Loisel is married toMarlen,
a charming young lady who is psychologist specialised in teaching
children with disabilities. We were so lucky to have a young family
as a reference in Cuba where both parents are also professionals.
They accepted to represent IPWSO and so Cuba became a member
of our International Organisation. They asked Caritas to help them
finding 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, Loisel
contacted me to achieve the participation of important speakers in
Spanish language from Latin America and Europe. The key speakers
I contacted accepted my invitation with enthusiasm and covered
their own travel expenses. The speakers are: Dr. Moris Angulo (El
Salvador-U.S.A.), Dr. Maria Del Valle Torrado, Dr. Hugo Serdloff, Karina
Abraldes (Argentina), Irune Achutegui (Spain-Italy), Dra. Fanny Cortes
(Chile). They covered all important aspects of the syndrome such as
genetics, endocrinology, paediatrics, 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 speakersmodified their own
presentations to be understandable 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
easiest 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 2
nd
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. We all slept at the same house where the Conference was
held and had meals at its restaurant, so we had 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 we had 63 people attending the workshop
so divided:
6 professionals from abroad
32 professionals from Cuba
6 parents from abroad
15 parents from Cuba
4 volunteers of Caritas Cuba
We can proudly show in the attached picture 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. We all cried listening to the mother
of Manolito, a 19 years old boy who died some months before.
Manolito’s mother came to honour the memory of his son with
her presence and participated to the discussion and sharing. At
the end she told everybody: “Dont’ miss the unique and precious
Cuba 2012.
[The important role of Parent Organisations to follow patients affected by Rare Diseases - Giorgio Fornasier]