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to India and this time to Bangalore in the South to participate to a
General Paediatric Congress againwith an information boothwhere
over 10,000 doctors attended from all over India. We were invited
by Prof. Palany Raghupathy a senior paediatrician who introduced
us to this important meeting and opened many important doors to
IPWSO. Shikha, a young mother bravely took the lead of a National
PWS Association and she keeps fighting for all children affected in
her country like a real tiger. “PARENTS CANMOVE THE MOUNTAINS”.
On January 21
st
, 2015 we received great news from Dr.
Raghupathy:
Dear Giorgio and Shikha,
Greetings from Bangalore!
Shikha will remember that in the last PWS Parent Group Meeting
which I organized here in Bangalore during May last year, I had
promised the parents who attended that I shall arrange for regular
checkup and follow up monitoring for these children periodically,
during which time, the parents would be able to consult all the
specialist consultants on the same day under one roof. Somehow, I
was unable to commence this service last year.
I am now pleased to inform you that I have made a beginning now in
the new year and we inaugurated the first
PWS Polyclinic Service
on 25
th
January 2015. We had 9 Paediatric and Adolescent specialists
in the Clinic, viz., Endocrinologist, Clinical Geneticist, Surgeon, ENT
surgeon, Gastroenterologist, Developmental Neurologist, Nutritionist
/ dietitian, Physiotherapist, and Occupational therapist were
available for individual consultations. The parents expressed their
appreciation in seeing all the specialists in one sitting and especially
those who travelled from places other than Bangalore found it very
convenient and time saving to get their medical advices from all the
consultants on a single day. Twelve families registered for the Clinic
this time but only five families attended, while the others expressed
regret for their inability to attend for reasons beyond their control.
In 2002 I had a first contact with Dorica Dan, a scared shy mother
from Zalau in Romania who asked for help. In 2003 we welcomed
her in Italy and started cooperation with Romania she was willing
to represent. Her daughter Oana was the first patient with PWS
diagnosed for free at the Genetic Molecular Laboratory at BIRD in
Italy where IPWSO office is located. Since then, this strong mother
turned into a tiger and became a determined leader, not only in
her own country, but also internationally. She organised together
with IPWSO the 6th International PWS Conference in Cluj Napoca
(Romania) and today she is Vice President of Eurordis. “PARENTS
CAN MOVE THE MOUNTAINS”.
With an incidence rate estimated to be one in 12,000 to 15,000
you can imagine how many cases of PWS can exist in large
countries like China and India. In 2008 I travelled to Mumbai
(India) to attend APPES, an International Endocrinology Congress,
with an educational booth to inform doctors about the syndrome.
While there, I visited an important paediatric hospital where I
met a famous professor head of the paediatric department of
this institution. He was surrounded by many young doctors who
were clearly afraid of him and he was quite impolite and rude
to me knowing the purpose of my visit because a parent dared
to talk about scientific matters. When I started describing the
Prader Willi Syndrome, he stopped me and said: ”This is a western
disease, no cases exist in India”. Then I asked the Indian parents
who accompanied me to give me the pictures they had of various
patients with PWS from all over the country. His reaction was
furious and he turned away sending me to the hell… I can’t forget
the thankful glance and admiration I saw in the eyes of the group
of doctors following this person. This is a common situation we are
facing in many countries when approaching some professionals,
especially where a diagnosis is not possible to be made in their
laboratory facilities. Our information booth was run by two young
parents from India as you can see on the picture and many doctors
called by. In 2009 Prof. Suzanne Cassidy and myself travelled back
Mumbai 2008.
BIRD 2002.
[REV. MED. CLIN. CONDES - 2015; 26(4) 503-510]