iRADiX

Forming Special focus groups

Forming Special Focus groups can help appreciate nuances otherwise lost in our “tunnel-vision-view-box” worlds. In previous entry we have discussed the VINDICATE grid to set protocols as per diseases.

The Pediatric Neurology Special focus group

“I initially missed out on this case,” Dr.Majdi Kara (See blog: http://www.iradix.in/309-Measuring-Referral-Slips.html ) admitted and told how Dr.Olivier had raised the possibility of this mentally retarded child having Muscular dystrophy.

Click on following image to watch Video

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The Floppy Baby: Professor Olivier Dulac of St.Vincent de Paul Institute, Paris demonstrating hypotonia and discussing the nuances.

The case has been worked up to be Fukuyama congenital muscular dystrophy (FCMD) which is characterized by hypotonia, symmetrical generalized muscle weakness, and CNS migration disturbances that result in changes consistent with cobblestone (previously type II) lissencephaly with cerebral and cerebellar cortical dysplasia.

Fukayama Congenital Muscular Dystrophy: Brain stem Atrophy with subtle posterior clefting, white matter Dysmyelination and cortical dysplasia-Type II Cobblestone Lissencephaly. Case courtesy: Dr.Majdi Kara, Professor of Pediatric Neurology, Children’s Hospital, Tripoli.

Neuroimaging features of FCMD. MRI reveals the findings of cobblestone lissencephaly comprising five major abnormalities including:

• Irregular or pebbled brain surface, broad gyri with a thick cortex (pachygyria) in the frontal, parietal, and temporal regions, and sometimes areas of small and irregular gyri that resemble polymicrogyria
• Dilated lateral ventricles
• White matter abnormality with hyperintensity on T2-weighted images and hypointensity on T1-weighted images indicative of dysmyelination
• Mild brainstem hypoplasia
• Cerebellar polymicrogyria and cerebellar cysts (observed on MRI in 23 of 25 individuals with FCMD [Aida et al 1994]

Source: Kayoko Saito, MD, PhD. Fukuyama Congenital Muscular Dystrophy

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=fcmd

A painful acknowledgment: The “Vasta” culture

An Arab Village scene

These special focus groups also open new windows as one sees families stoically follow up children whose prognosis is poor.

“I feel very bad when our people behave like that,” came the observation over the aggressive behavior of some relatives.

“They need not behave like that. Earlier the facilities were not available, but now slowly things are changing.” Dr.Rima Naggout, the Lebanese Arab origin Professor of Pediatric Neurology now practicing in Paris said as we were discussing the aggressive behavior of some of the relatives who had come for review.

“I am Arab and know how our societies are organized” Dr.Rima continued, revealing a different level of sensitivity which would be lost to those who have not seen these layers.

Dr.Majdi Kara who is spending his holiday canvassing for the visiting professor from France and has gathered all the records and scans of the review patients (almost single handed) was arguing with some of the more aggressive patients to keep order.

“There is no ‘vasta’” he said. (Vasta in Arabic-roughly paraphrased –Influence due to contacts/position). “I will follow the list and that is it.”

Even then he could not resist some recommended “vasta” cases.

“They do not need to behave like that, as we are trying to organize things.”

Many of these realities are similar in other developing uneven societies too.

Journeys of Silence

Triumph of Labor-Bronze Sculpture by D.P.Roy Choudhary in the front lawns of National gallery of Modern Art-Jaipur House New Delhi.

In Blog http://www.iradix.in/503-Live-and-let-die.html Dr.Sridhar quoted John Kenneth Galbriath "Under capitalism man exploits man Under communism...it is just the opposite” As US President Barack Obama battles for health care reforms in America where millions are without health insurance, (why this superfluous repetition regarding Insurance and Social Security in India, some may ask where it is the done thing to have no insurance for the majority of the population) our middle class debates have the recurrent underlying theme that Ideology has nothing to do with these corrupt layers.

In “A Theory of Literary Production” Pierre Macheray provides the following formula for the interpretation of ideology.

“ What is important in a work is what it does not say although that would in itself be interesting; a method might be built on it, with the task of measuring silences, whether acknowledged or unacknowledged. But rather this, what the work cannot say is important, because there the elaboration of the utterance in carried out, in a sort of journey of silence.”

In this debate there is a silence regarding some issues.

The Ideology of Consumerism which has pervaded our middle class with more and more disposable incomes and how the dispossessed Medical refugee does not seem to figure much in the discussions –comments which followed even active discussions like those following the blog http://www.iradix.in/432-Puppets-in-a-Puppet-Show.html (which the Slovenian Lacanist Philosopher Slavo Zizek has referred to as “Economic Apartheid” in the emerging economies)

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I initially missed out on this case -the words of Dr.Majdi Kara came back to me, as I thought about some of our shallow debates which are silent on some crucial issues.

Forming special focus groups can help…….