Lorenzo's oil: The full story

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alternative_medicine_forum From: Frank Thu, 22 Jul 2004 03:52:20 -0700 (PDT) Lorenzo's oil: The full storyhttp://news.bbc.co.uk/2/hi/health/3907559.stmLorenzo's oil: The full storyLorenzo Odone is 25 years old and lives in Washington.Eighteen years ago he was diagnosed with an incurabledisease and given less than two years to live.His remarkable survival is due to his parents' singleminded refusal to accept the doctors' grim prognosis.With no scientific training they took on the medicalestablishment and set about finding a cure. And in1986 it seemed they had succeeded.I asked the doctor if I could read the medicalpapers. He said: 'Don't bother, you won't understandthem'.Augusto OdoneTheir astonishing story was

told in the Hollywoodmovie, Lorenzo's Oil.The movie painted a fairytale picture of a miraclecure, and gave hope to thousands of young childrensuffering the same devastating illness.But these claims have always been controversial. Now,as BBC television documentary series Medical Mysteriesreports, a 10 year study into the effects of Lorenzo'sOil has come up with surprising results.The oil doesn't seem to work for people who arealready ill - but it does seem to prevent illness inthose whose genes make them vulnerable to developingsymptoms.Lorenzo suffered from Adrenoleucodystrophy (ALD), agenetic disease that progressively destroys the brainof young boys.Within a year children are paralysed, blind, unable tospeak. It is invariably fatal.DesperationWhen he was diagnosed, Lorenzo's father Augusto wasdesperate."I was terrorised, I was shocked. Well, it's a

deathsentence."So I asked the doctor if I could read the medicalpapers. He said: 'Don't bother, you won't understandthem'."Undeterred, Augusto Odone spent night after night inthe library scouring every single paper about hisson's illness.He discovered that the brain damage seemed to belinked to a build up of dangerous fatty acids in theblood - long chain fatty acids.He invited all the world experts to a conference todiscuss the research, and it was at the conferencethat he first found a glimmer of hope.An oil - oleic acid - was able to destroy these fattyacids.Less than a year later Augusto and his wife Michaelahad a treatment: a combination of oils thateffectively reduced the long chain fatty acids in theblood.It was astonishing. Where the entire medicalprofession had failed, two ordinary parents hadsucceeded.OptimismDr Hugo Moser, the world authority

on ALD, remembersthat early optimism."Lorenzo's oil lowered the fatty acids moreeffectively than any other medical approach that hadbeen tried. We would be foolish not to give it veryserious consideration."Augusto published his findings and Dr Moser startedputting all of his young ALD patients on the oil.For one family in Britain, news of the Odones' triumphcouldn't have come at a better time.The Stafford family had just discovered that theirseven-year-old son Barry had just been diagnosed withALD.They flew over to America and Barry became the firstBritish patient to be put on Lorenzo's oil.Within weeks his long chain fatty acid levels haddropped to normal.Younger brother at riskBut the Staffords anguish wasn't over. Because ALD isa genetic condition there was a 50:50 chance thatBarry's younger brother Glenn would have the defectivegene too.At the time Glenn

was only two years old, so hewouldn't have started showing any symptoms even if hehad the disease.But a blood test confirmed their worst fears. Glenntoo had the faulty gene.Alfie Stafford, the boy's father, said: "It felt likeour world was turned upside down again. We could losetwo boys. We could lose two boys within 10 years."Very little is known about how ALD is inherited. Girlswho have the gene do not show any symptoms, and notevery boy with the faulty gene goes on to develop thedevastating childhood form - ALD.Glenn might not develop ALD, but Dr Moser put him onLorenzo's oil in any event.In fact, Glenn became the first non-symptomatic childto be put on the oil.Reality differentOver the next few years, the movie Lorenzo's oil,starring Susan Sarandon and Nick Nolte, was released.It received huge acclaim, and Susan Sarandon was Oscarnominated for her role as Lorenzo's

mother.It showed a miracle cure but the reality was beginningto look very different.Lorenzo himself was still alive, but was not gettingbetter; and one by one, other children on the oildied.Barry Stafford was getting worse and worse, and hismother Chris was upset at the hype round the film."Lovely film - but I did have a problem - it made itseem like a miracle cure, but it's not and I've provedthat with Barry, " she said.Seven years after being put on the oil, Barry died.The disease had caused massive brain damage and theoil didn't seem to be able to stop the progression.Barry's fate was not unique. Other children were alsodying, despite being on Lorenzo's oil.Doctors all over the world stopped prescribing theoil.Preventative effectIt's due to the oil that I'm here now.Glenn StaffordAugusto Odone turned his formidable drive into anotherarea of research - trying

to regenerate the damagednerves in the brain.Dr Moser, however, was not prepared to give up. Hedecided to focus on boys who had the ALD gene but hadnot yet developed the symptoms.Perhaps the oil could prevent the disease everappearing. Boys like Barry's younger brother Glennwere put on the oil.After 10 years the results are finally through. Andthey are dramatic.Of 120 boys in the trial 83 are still free of thedisease. Lorenzo's Oil is showing a significantpreventative effect.According to Dr Moser taking the oil reduced thechance of getting the disease by half.And Glenn Stafford, the first non-symptomatic patientto be out on the oil is now 21 years old and fullyfit."If they hadn't caught the disease and put me on theoil then I don't think I would be here now," he said."So it's due to the oil that I'm here now."So now there is real hope. Tests can identify

boyswith the gene, and the oil gives them a hugelyimproved chance of escaping the horrific disease.And Augusto Odone? He's delighted with the findings.But he's still, 15 years on, looking for a cure forhis son who lies at home, paralysed by the ALD.Medical Mysteries - Lorenzo's Oil was broadcast on BBCOne on 21 July at 2235 BST.Story from BBC NEWS:http://news.bbc.co.uk/go/pr/fr/-/2/hi/health/3907559.stmPublished: 2004/07/21 08:12:20 GMT© BBC MMIV