양극성장애를 알리는 글

의학명 'Bipolar affective disorder', 우리말로 '양극성정동장애', 흔한 말로 '조울병' 혹은 '조울증'에 대해 글을 쓴다.

 

1984년 미국에서 로렌조 오돈이라는 다섯 살 어린이가 부신백질이영양증(ALD)이라는 난치성 희귀질병에 걸렸다. 로렌조의 아버지 Augusto Odone과 어머니 Michaela Odone은 이 아들을 치료하기 위해 회사를 그만두고 질병 연구에 매달렸다. 의사들은 이 환자를 포기했지만 부모는 아들을 포기할 수 없었다.

 

로렌조와 그의 아버지 오돈. 그는 결코 포기하지 않고 마침내 로렌조 오일을 발견해냈다.

Lorenzo Odone 1978년 5월 29일(0625코드) ~ 2008년 5월 30일(1125코드) (30세)

 

로렌조의 아버지 아우구스토는 마침내 이 질병이 부신백질이영양증이라는 것을 알게 되고, 매우 긴 사슬 지방산(VLCFA) 때문에 발병한다는 질병 원리를 알아냈다. 그리하여 이 지방산을 보충하면 치료가 가능하다는 것을 또 알아내고 마침내 '로렌조 오일'이라는 치료물질을 개발해냈다. 이 물질은 올레산과 에루신산을 4:1로 섞은 혼합물이다.

 

하지만 로렌조는 그의 아버지 오도니가 이 '로렌조 오일'을 완성할 무렵 증세가 악화되어 회복이 불가능했고, 30세 생일 하루 뒤에 숨을 거두고 말았다. '로렌조 오일'은 비록 로렌조를 구하지는 못했지만 로렌조가 앓던 병을 앓는 다른 환자들을 무수히 구해내고 있다. 오늘날 부신백질이영양증은 더이상 난치병이 아니다.

 

로렌조 오일은 물질특허를 얻었으나 의약품이 아니기 때문에 건강보험 적용을 받지 못한다. 이 환자들은 월 440달러 어치의 로렌조 오일을 처방받아야 한다. 로렌조 오일 판매 로열티는 로렌조 부모가 세운 <마일린 프로젝트>에서 난치병 치료연구에 쓰인다.

<영화 '로렌조 오일' 감상하기>

 

로렌조의 아버지 아우구스토 오돈은 아들이 발병한 이후 약 25년간 ALD 연구에 매진했으며, 난 이 사실에 주목한다. 이 카테고리 역시 아우구스토의 자세로 완성되어 갈 것이다.

 

이 카테고리에 담을 글은 학습자나 관찰자가 보고 겪고 기록한 것이 아니다. 더 생생하고 유익한 내용이다. 양극성정동장애를 직접 앓고 있거나 자녀가 앓고 있는 부모라면 이 자료들이 큰 도움이 될 것으로 믿는다. 이 카테고리를 읽기 위해서는 친구신청을 해야 한다. 환자의 병명과 복지카드 번호를 제시하면 친구로 받아줄 것이다. 양극성정동장애가 아니어도 정신분열증, 지적장애, 자폐증, 우울증, 뇌전증, 심각한 학습장애, 기타 정신관련 장애를 앓고 있는 본인이나 가족이면 된다. 정신과 의사는 사양한다. 정신과 의사를 사양하는 이유는 그들을 신뢰하고 그들의 치료를 받아야 함에도 불구하고 그들을 적당히 비판하는 글이 올라갈 수 있기 때문이다.

- 이 천사는 아빠에게 꼭 전할 말이 있어 스스로 아프게 태어났다.

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Lorenzo's oil: The full story

Augusto Odone refused to give up on his son Lorenzo Odone is 25 years old and lives in Washington. Eighteen years ago he was diagnosed with an incurable disease and given less than two years to live. His remarkable survival is due to his parents' single minded refusal to accept the doctors' grim prognosis. With no scientific training they took on the medical establishment and set about finding a cure. And in 1986 it seemed they had succeeded. I asked the doctor if I could read the medical papers. He said: 'Don't bother, you won't understand them'. Augusto Odone Their astonishing story was told in the Hollywood movie, Lorenzo's Oil. The movie painted a fairytale picture of a miracle cure, and gave hope to thousands of young children suffering the same devastating illness. But these claims have always been controversial. Now, as BBC television documentary series Medical Mysteries reports, a 10 year study into the effects of Lorenzo's Oil has come up with surprising results. The oil doesn't seem to work for people who are already ill - but it does seem to prevent illness in those whose genes make them vulnerable to developing symptoms. Lorenzo suffered from Adrenoleucodystrophy (ALD), a genetic disease that progressively destroys the brain of young boys. Within a year children are paralysed, blind, unable to speak. It is invariably fatal. Desperation When he was diagnosed, Lorenzo's father Augusto was desperate. "I was terrorised, I was shocked. Well, it's a death sentence. "So I asked the doctor if I could read the medical papers. He said: 'Don't bother, you won't understand them'." Both the Stafford brothers had ALD genes Undeterred, Augusto Odone spent night after night in the library scouring every single paper about his son's illness. He discovered that the brain damage seemed to be linked to a build up of dangerous fatty acids in the blood - long chain fatty acids. He invited all the world experts to a conference to discuss the research, and it was at the conference that he first found a glimmer of hope. An oil - oleic acid - was able to destroy these fatty acids. Less than a year later Augusto and his wife Michaela had a treatment: a combination of oils that effectively reduced the long chain fatty acids in the blood. It was astonishing. Where the entire medical profession had failed, two ordinary parents had succeeded. Optimism Dr Hugo Moser, the world authority on ALD, remembers that early optimism. "Lorenzo's oil lowered the fatty acids more effectively than any other medical approach that had been tried. We would be foolish not to give it very serious consideration." Augusto published his findings and Dr Moser started putting all of his young ALD patients on the oil. For one family in Britain, news of the Odones' triumph couldn't have come at a better time. The Stafford family had just discovered that their seven-year-old son Barry had just been diagnosed with ALD. They flew over to America and Barry became the first British patient to be put on Lorenzo's oil. Within weeks his long chain fatty acid levels had dropped to normal. Younger brother at risk But the Staffords anguish wasn't over. Because ALD is a genetic condition there was a 50:50 chance that Barry's younger brother Glenn would have the defective gene too. Barry Stafford was the first Briton to use the oil At the time Glenn was only two years old, so he wouldn't have started showing any symptoms even if he had the disease. But a blood test confirmed their worst fears. Glenn too had the faulty gene. Alfie Stafford, the boy's father, said: "It felt like our world was turned upside down again. We could lose two boys. We could lose two boys within 10 years." Very little is known about how ALD is inherited. Girls who have the gene do not show any symptoms, and not every boy with the faulty gene goes on to develop the devastating childhood form - ALD. Glenn might not develop ALD, but Dr Moser put him on Lorenzo's oil in any event. In fact, Glenn became the first non-symptomatic child to be put on the oil. Reality different Over 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 Oscar nominated for her role as Lorenzo's mother. It showed a miracle cure but the reality was beginning to look very different. Lorenzo himself was still alive, but was not getting better; and one by one, other children on the oil died. Barry Stafford was getting worse and worse, and his mother Chris was upset at the hype round the film. "Lovely film - but I did have a problem - it made it seem like a miracle cure, but it's not and I've proved that with Barry, " she said. Seven years after being put on the oil, Barry died. The disease had caused massive brain damage and the oil didn't seem to be able to stop the progression. Barry's fate was not unique. Other children were also dying, despite being on Lorenzo's oil. Doctors all over the world stopped prescribing the oil. Preventative effect It's due to the oil that I'm here now. Glenn Stafford Augusto Odone turned his formidable drive into another area of research - trying to regenerate the damaged nerves in the brain. Dr Moser, however, was not prepared to give up. He decided to focus on boys who had the ALD gene but had not yet developed the symptoms. Perhaps the oil could prevent the disease ever appearing. Boys like Barry's younger brother Glenn were put on the oil. After 10 years the results are finally through. And they are dramatic. Of 120 boys in the trial 83 are still free of the disease. Lorenzo's Oil is showing a significant preventative effect. According to Dr Moser taking the oil reduced the chance of getting the disease by half. And Glenn Stafford, the first non-symptomatic patient to be out on the oil is now 21 years old and fully fit. "If they hadn't caught the disease and put me on the oil 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 boys with the gene, and the oil gives them a hugely improved 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 for his son who lies at home, paralysed by the ALD. Medical Mysteries - Lorenzo's Oil was broadcast on BBC one on 21 July at 2235 BST.