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Goldenhar syndrome

Goldenhar syndrome - AKA Oculo-Auriculo-Vertebral (OAV) syndrome, sometimes used interchangably with Hemifacial Microsomia (although this definition is usually reserved for cases without internal organ/verterbrae disruption) - is a congentinal defect affecting between 1/3500 to 1/26000 live births in the UK. more...

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Symptoms

Chief markers of Goldenhar syndrome are incomplete development of the ear, nose, soft palette, lip, and mandible on usually one side of the body. Additionally, there are often issues with internal organs, especially heart, kidneys, and lungs. Typically, the organ will either not be present on one side or will be underdeveloped. Note that whilst it is more usual for there to be problems on only one side, it has been known for defects to occur bilaterally (approximate inicidence 10% of confirmed GS cases).

Other problems can include scoliosis (twisting of the vertebrae), and lipodermoids (fat in the eye).

Causes

Causes of Goldenhar Syndrome are unknown, although there is anecdotal evidence linking it to exposure to certain toxins (e.g. dioxin) before or during pregnancy. There is circumstantial evidence suggesting the incidence of GS is higher in children of gulf war veterans (see gulf war syndrome).

Treatment

Treatment is usually confined to such surgical intervention as may be necessary to allow the child to develop normally (e.g. jaw transplants in cases where the patient would otherwise be unable to eat properly).

Read more at Wikipedia.org


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Poisoned legacy: Felicity Arbuthnot investigates the worldwide spread of cancers and deformities since the Gulf War
From New Internationalist, 9/1/99 by Felicity Arbuthnot

MORE ordnance was rained down on Iraq during the six weeks of the Gulf War than was dropped in the whole of World War Two. Unknown to the public or the Allied troops at the time, much of it was coated with depleted uranium (DU). This nuclear waste has replaced titanium as a cheap coating for weapons which can pierce armour. It burns on contact, producing a fine dust which can be ingested and inhaled and which enters the food chain via water and soil.

`The risks associated with DU are both chemical and radiological' states the US Army's Environmental Policy Institute, emphasizing that as a `low-level radioactive waste' it `must be deposited in a licensed repository' and that `inhaled insoluble oxides stay in the lungs and pose a potential cancer risk.'(1) Radioactivity only begins to diminish after 4,500 million years.

In 1990 the UK's Atomic Energy Authority sent a report to the British Government, estimating that if 50 tonnes were left in the Gulf area should there be a war, then these would lead to an estimated 50,000 extra cancer deaths in a decade. Experts now estimate that there may be 900 tonnes remaining, travelling where the wind blows.(2)

By early 1992, doctors in Iraq were bewildered by the rise in birth deformities-some so grotesque and unusual that they expected to see them only in textbooks and perhaps once or twice in a lifetime. They compared them to those recorded in the Pacific islands after the nuclear testing in the 1950s. Cancers too were rising, especially amongst the young; the most susceptible to radiation.

It was not until 1993 that the fact that DU had been used in the Gulf War began to emerge. Concerns were countered by Washington and Whitehall along the lines of `no immediate danger' and `only very, very mildly radioactive.'(3) This was despite the fact that tanks returned to the US from the Gulf War were immediately transported to the nuclear decontamination facility at Barnwell, North Carolina.(4)

In Iraq, children were (and are) collecting fragments of bullets or missiles as a way of coming to terms with the war. They bring them home or take them to school for display. Professor Seigwart Horst Guenther, scientist, founder of the American Yellow Cross and Director of the Albert Schweitzer Institute, collected one such bullet from Basra in southern Iraq for analysis and transported it to Germany-correctly encased in a radiation-proof lead box. On arrival at Berlin airport he was promptly arrested for transporting radioactive material-it had activated all the radiation sensors.

Among those soldiers returning from the Gulf War alarming symptoms appeared almost immediately. Eddie Blanche, from Newcastle in northern England, had been an army fitness instructor, passed `Al-fit' immediately prior to action in the Gulf.

`I ran 30 kilometres with a 15-kilo pack on my back. I went there a physical specialist and came back a physical wreck,' he says wryly, his sense of humour still intact. He has lost the sight of one eye, can walk only for short distances-with the shortest of breath-and suffers agonising joint pains. The exhaustion of even talking shows after minutes, his face bathed in perspiration.

In the US over one-third of the 600,000 veterans deployed in the Gulf have sought help from Veterans' Administration hospitals; in Britain 8,000 of the 29,000 troops are ill and over 400 have died.(5) In May 1999, a coroner in the north of England stated that he dealt with one case a week of Gulf War veterans committing suicide.(6) In Australia, Canada and New Zealand similar scenarios are being recorded.

A study of cancers and leukaemias among 1,400 Iraqi soldiers who had been in the heavily bombarded area around the southern town of Basra showed chilling increases; for example, ten cases of lymphomas in 1991 and 106 in 1996. Brain cancer too showed a startling rise; one case in 1991 and 40 in 1996.

These statistics are the reality for many. When Amy West's husband returned safely from the Gulf to their US home in small-town Mississippi, they decided to celebrate by having another baby. Their daughter was born with a rare lung condition, Goldenhar's Syndrome. Shortly afterwards Amy heard of babies born to two other veteran's wives with the same condition. She spent a a year, nightly, after work, tracing and phoning those in the same town who had been in the Gulf. Had they had a baby since? If so, was it healthy? Out of 251 families with new babies, 67 per cent had congenital abnormalities; ears, eyes or fingers missing, severe blood diseases or respiratory problems. Compiled with the help of the family doctor, an old friend who had known Amy since childhood, she sent her findings to the Presidential Advisory Committee on Gulf War illnesses. They were rejected by the Convenor, Bernard Rostker, as `unscientific'. The doctor told Amy that he was very sorry and very embarrassed, but he could no longer work with her. He was equally sorry that he was unable to tell her why.(7)

Professor Asaf Durakovic (see the interview in NI 305) would perhaps have had an answer as to why. He is one of the world's leading experts on radiation, and sees a familiar pattern. `Any doctor who becomes involved in this subject is pressurized, fired; records and samples go missing...' Durakovic was `horrified' when he learned that DU had been used in the Gulf and wrote to President Clinton in February 1997: `I am bringing to your attention the conspiracy against Gulf veterans of the United States.' Shortly afterwards his senior position at the Department of Nuclear Medicine at the Veterans' Administration Authority in Wilmington, Delaware, was terminated.

Ray Bristow, of the British Gulf Veterans and Families' Association, echoes Durakovic: `Dosimeters (which read radiation levels) issued to troops were at first denied as being issued at all, then we were told the records were lost, then that the readings were all normal-but no-one was allowed to see them. Medical records of Gulf War vets regularly go missing.'

Bristow served as a medical technician with the 32nd Field Hospital in Saudi Arabia and is one of the many ill veterans to put pressure on the British Medical Assessment Programme (MAP), established by the Ministry of Defence in response to Gulf War illness, to test for DU.

On 17 January 1998, the seventh anniversary of the start of the Gulf War, he and other seriously ill veterans returned their medals to protest at their plight. In December 1998, together with Dr Colin Purcell Lee, another sick Gulf veteran, he took a momentous decision: they would go to an international conference entitled `Health and Environmental Consequences of Depleted Uranium used by the US and British forces in the 1991 Gulf War.' The place? Baghdad.

Both brush off the journey, gruelling even for the fittest, and taken at inestimable cost to the seriously ill. Colin Purcell Lee describes one desperately sick Iraqi colonel: `He clearly did not have long to go; we put our arms around each other and just held on. It was healing for both of us.' Says Bristow: `To think that I had to go to Iraq to discover what was wrong with me, only to find it mirrored there.' He recounts standing in a hospital, waiting to be interviewed by the BBC, at last able to bring the plight of Gulf War victims to the eyes of the world.

`I am a medic, trained to react with practicality, not emotion; I was surrounded by children dying of leukaemias and cancers who had access to no or minimal treatment and all I could do was cry uncontrollably. So there was no interview, no publicity for us or for those suffering in Iraq.'

Until recently cancer medication was vetoed as `dual use' by the Sanctions Committee-because it contained minute traces of radiation.

Bristow and Purcell Lee arrived home `to find we had been called traitors by a senior Cabinet Minister' and that their homes had been raided by Ministry of Defence Police. All computers, discs and files had been removed in search of a document which showed that the Medical Director of MAP was liaising with Porton Down Chemical Weapons Establishment over concern that DU was a contributory cause of the veterans' plight. For eight years MAP refused to countenance such a scenario and were still denying it to the veterans themselves. In June this year, when the plight of Australian Gulf veterans was commanding extensive media coverage, all computer discs and files relating to Gulf War illnesses were stolen from the home of campaigner Philip Steele. Nothing else was missing.

In March this year, sick veterans from Canada, the US, the UK and Iraq sent urine samples to be tested for DU to highly respected Professor Hari Sharma, Professor Emeritus in Chemistry at the University of Waterloo, Ontario, in Canada. The results were astonishing. All were positive, and some, including Ray Bristow, had readings of over 100 times the `safe' limit in their bodies. So did Terry Riordan, who received his results on Wednesday 28 April. He was the first Canadian veteran to be tested by Sharma. Riordan and his wife Sue had run up debts of $100,000 for medication and in order to prove that the cause of his debilitating illness was exposure to radiation in the Gulf War. On Thursday the 29 April, Riordan died. The death certificate recorded his death as due to `Gulf War Syndrome'. He donated his body to the Gulf veterans for tissue testing.

Sharma, who had never been involved in a campaign before, wrote to NATO and the heads of state of all countries with DU weapons, `begging' them to withdraw them from their country's arsenals and condemning DU as a `crime against humanity'. Sharma also predicted that were his results representative. `a conservative estimate-and I stress conservative' is that there would be 36,000 extra cancer deaths amongst Gulf War veterans. Sharma has been withdrawn from any further DU testing. Coincidentally, the Ministry of Defence in Britain announced shortly afterwards that MAP would, after all, test veterans for DU.

In August 1996 the UN Sub-Commission on Human Rights had designated DU as a weapon of mass destruction along with napalm, fuel airbombs, and cluster bombs. Depleted uranium was used in Bosnia in 1995 and cancers had risen threefold by 1997. DU weapons were extensively used in the recent war in the Balkans. Radiation readings in Hungary, Bulgaria and Greece have recorded air samples exceeding by 40 times the recommended safety limit of radiation associated with DU. The British Ministry of Defence points out that Armed Forces Minister Douglas Henderson had given strict instructions that no troops were to approach any target which might have been hit by DU unless they were wearing protective clothing against radiation. Asked about the problem of the people living in and returning to the region, the Ministry of Defence said that was for the UN High Commissioner for Refugees to resolve. DU weapons have now been sold to 17 countries.

In Iraq, which has had nine years to feel the full effects of DU, cancers have risen up to tenfold. Dr Huda Ammash, an environmental biologist at Baghdad University, who obtained her PhD from the University of Missouri, calculates that `the prolonged effect of this (radiation) is, over a period of more than ten years, equal to 100 Chernobyls.'(8)

In Basra, radiation levels in flora and fauna have reached 84 times the World Health Organization's recommended safe limit. Here, the unimaginable can be found. Dr Jenan Ali at Basra General Hospital in southern Iraq has a photographic record of all the babies born with no eyes, brains, limbs, genitalia; internal organs on the outside; grotesquely deformed little heads and bodies.

In Mosul in northern Iraq, studies undertaken by four universities show a fivefold increase in cancers after 1991.(9) An informal survey in the area counted 20 malformed babies in 160 houses; the majority of fathers had served in the Gulf War. US journalist Barbara Namim Aziz reports a farmer remarking that there were fewer marriages as a result: `Young people fear the birth of malformed foetuses and still births...we look around our village, everyone knows couples who have had deformed babies.'

Soaring cancers in Iraq since the Gulf War are well documented. Less so is the human cost-the beds occupied by small figures one day, eloquently empty on return. I remember Esra, in the Al Mansour Children's Hospital in Baghdad, frail, beautiful, 17 years old-old enough to know she was dying. Cancer had mostly paralysed her central nervous system, but did not prevent her crying. She had been crying for three weeks-she wanted to be well, go home, continue her studies, and, most of all, to live. Jassim, the boy who dreamed of being a poet (NI 309) will haunt for all time.

Ali Maksoud, aged two, did not even get a bed in hospital. `This patient is beyond help, there is nothing we can do,' said Dr Selma Al Haddad, oncologist at Al Mansour. Formerly he would have had palliative care, but beds and resources are now for the slimmest of chances, not the small no-hopers. Outside the hospital, leaning against one of the great white pillars at the entrance, his mother sat on the ground, Ali clutched to her under her black abaya; her tears falling on his small, still face.

It is estimated that if cancers continue on the present upward curve, 44 per cent of the population will develop cancer within ten years.(10)

`In embarking upon a course, always consider the seventh generation' goes an American Indian saying. Unless we heed their words, there may not even be a third.

Felicity Arbuthnot is a freelance journalist specializing in social and environmental issues with a special knowledge of Iraq. She is writing a book on the plight of those affected by the Gulf War.

(1) Health and Environment Consequences of Depleted Uranium in the US Army, June 1995.

(2) Military Toxics Program.

(3) The hazards of uranium have been known for centures. Cancers and birth deformities amongst uranium workers and miners from New Mexico to Namibia and Canada to China have been the subject of ongoing studies.

(4) International Herald Tribune 25 April 1992.

(5) Armed Forces Minister Lord Gilbert.

(6) Hull Daily Mail.

7 Sydney Morning Herald 10 June 1999.

(7) Interview with the author.

(8) Metal of Dishonour, International Action Centre, 1997.

(9) Paper by Professor MM Al-Jebouri, University of Tikrit, December 1998.

(10) Johns Hopkins University and paper presented by Professor Mikdem M Saleh in Baghdad, December 1998.

COPYRIGHT 1999 New Internationalist Magazine
COPYRIGHT 2004 Gale Group

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