Tuesday, November 9, 2010

I would like to back up Prof Ryan’s request

Leprosy Mailing List – October 5th, 2010

Ref.:   “I would like to back up Prof Ryan’s request”
FromG. Warren, Sydney , Australia



Dear Salvatore,

I would like to back up Prof Ryan’s request (LML – Sept. 25th, 2010).  I know from letters, from workers in several countries, that the majority of the  Government agencies are accepting that leprosy is Eliminated and that means eradicated!  I am so sorry THAT THAT TERM ELIMINATION EVER GOT CONNECTED TO LEPROSY.  It has made our task much harder.

From personal experience I know that most fully developed LL patients need for more than the 12 months of multi-drug therapy (MDT) as recommended by WHO.  Many workers do not realise that the bacteria can survive in the nerves for many years of full MDT and certainly may not be eradicated, and once the MDT ceases the disease may return in a year or  two.  This may result in registration as a new patient because the name was removed from the original “affected“ list so the patient cannot relapse!  No wonder WHO has such small “relapse” rates!

I have heard that in large areas of some counties, once they think elimination has occurred, the previous regular surveys have all ceased and  the patients are left to voluntarily report if they suspect leprosy.  Of course anyone who had had the disease "Eliminated” would not think of it coming back!  Yes, the neglected tropical diseaseliterature needs to be well aware of this and promote more funding to continue surveys and teaching of the true facts in many countries.  This would include the Medical personnel in developed countries, who need to be taught and to remember that anyone who has been to an endemic country as a tourist could develop the disease in the next say 10 years and, of course refugees from those countries.  I have seen some horrible mistakes where patients have been missed till deformity is gross.  World travel is becoming so frequent we do not need to work in an endemic country to see leprosy.  IF we look for it. 

Thank you Prof Ryan for voicing the problem.  Has anyone got some answers?  I now work in Australia after 50 years all over Asia and some other areas and get very depressed at the “relapses” I see who have been told “eliminated”.  One patient is now on his third bout of leprosy, having completed MDT twice before (in two other countries!) and told: cured!

Yours sincerely,

Grace  Warren
Previously Adviser in Leprosy and Reconstructive surgery for the Leprosy Mission  in Asia( 1975-94)

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