ALD genetic illness or chemical toxicity?

[Guest guest]

ALD (Adrenoleukodystrophy) Genetic or Environmental I have to admit that I did rather jump at this illness and if you read the medical literature it is firmly put or was in the camp of a genetic illness the medical experts in this area. I have cobbled together some information the most surprising of which for me is the skin darkening effect (symptom or caused by common treatments?). For me ALD comes very close to being a variant of autism. The thing that occurs to an outsider though is that if ALD is a genetic illness why are the genes in dozens of different parts of the X chromosome and why therefore do girls get the illness at 5 times less than boys if they are supposed to be carriers but immune of an exceptionally rare illness? The maths simply don’t add up. You would expect on the current theory that the illness for girls it would be almost non existent. Why do people get the illness, variably at birth, at age 4, at age 10 or at age 20 or presumably any time if its genetic? For an environmental exposure this is quite simply what you would expect. You get the illness after an exposure. ALD is an illness that affects more males than females but in line with autism and the almost certainty of the mercury connection that occurs in at least some cases we could ask is this a delayed and lower grade of autism but with often a more serious, virulent outcome? Are any researchers doing a mercury/heavy metal challege test and looking for and analysing for heavy metal involvement or any chemical involvement in ALD? Again the ‘genetic’ illness although given a single name can affect children or adults and normally you would expect it to follow some sort of common pattern rather than this random appearance. It appears from reading to be extremely variable in its forms indicating immediately some direct chemical causation. It would be interesting to look for example at their exposures to heavy metals directly and through vaccines too, as well as other chemical risk factors. How do genetic modellers explain the body has formed perfectly and then suddenly destorys itself? Again chemical toxin exposure does exactly this and does not require some fanciful explanation how one day the body works fine and the next day packs up in perhaps a baby a week old, a month old, a year old etc. How many other sudden collapse are put down to rare genes when maybe someone cocked up on medication like injecting brain killing mercury into the foetus? Partly; because this illness is comparatively rare there may be huge errors in the science and as shown by the film Lorenzo’s Oil where the experts were completely at a loss as to how to treat this illness and although not a man made drug, the treatment discovered by the parents is still one of the best treatments that can be applied to these patients. Also the certain lethality of this illness seems at present to have escaped Lorenzo who was not subject to life threatening medical attempts at cure by doctors who while certain of a genetic origin connot tell you which of dozens implicated are to blame. They offer no cure except to offer chemically toxic exposure worse than mercury followed by medical interventions deep inside the body laying it open to any adventitious bug, germ or viorus. The mainstream medical treatments are therefore interventionist, gruelling and the results evidently are not good long term. In fact the prognosis is death with an extension of life by a year or so by allowing yourself to be the guniea pig or is it lab rat for the highly paid researchers? For me, while acknowledging my knowledge is close to zero on this matter and therefore just asking some elementary questions it does look as if even the experts in this field may have a less than zero knowledge, hiding behind the modern advancement of chromosome analysis to come up with hair brained ideas that don’t just add up and are of no help to anyone outside their magic field in any event. They are certainly bad news for a sufferer and can bring down dangerous treatments to those clinically well. The death of one worker last year, Dr Moser, appears to have buried most of the research as well into this awful illness, but others seem to continue and purport to possess the knowledge that this world leader in the field was seeking so hard at the time of his death.. Truly genetic illnesses are often very precise in their nature. My own red-green colour blindness is absolutely simple to detect and fortunately has no effect on the quality of life except that the perception of colour is completely different to normal people and in the dark the greys appear while the world is still multicoloured to most others. People normally have a very similar type of problem and not one of dozens, not something that kicks in when it feels like it and is precisely pin pointed I believe on the chromosome concerned. The condition kicks in immediately and lasts for life and there is no cure. Looking at the symptoms for ALD it does ring a few bells for autism too: Parents often notice changes in behaviour first. Next, memory and school performance begin to fall off and the child develops problems with vision, hearing, speech, swallowing, gait and coordination. There may be fatigue, seizures and sometimes an increase in skin pigmentation. Progressive dementia eventually leads to death. Or these symptoms : When examining for the symptoms, there are many characteristics to look for. Some of the symptoms include Attention Deficit Disorder, epilepsy, brain tumors, multiple sclerosis, visual disturbances, clumsiness, progressive stiffness and weakness of legs, abnormalities of sphincter control, sexual dysfunction, autonomic disturbance unexplained vomiting and weakness or coma, hemiparesis (muscle weakness), aphasia (unable to talk), dementia, and impotence without neurologic or endocrine disturbance (6). Though an individual with ALD may have only one of these symptoms, it is more common for them to have several. In neonatal ALD, the newborn baby is usually floppy, with poor muscle tone and an abnormal facial appearance. The liver may be enlarged and seizures develop. There may also be degeneration of the retina and adrenal gland damage. Symptoms usually progress very rapidly. About one in five women carrying X-linked ALD develop a mild form of the condition in adulthood, with progressive symptoms similar to adult-onset ALD. There's no cure for ALD. Supportive treatments, including replacement of adrenal hormones, physiotherapy and special help at school, can control some of the symptoms or reduce their impact. Research suggests that a mixture of oleic acid and euric acid, known as Lorenzo's oil, may delay or reduce symptoms in boys with X-linked ALD by lowering levels of VLCFAs (very long chain fatty acids). The most benefit is seen when the treatment is used before symptoms develop, before irreversible damage has occurred. Bone marrow transplants have also been used with some success in boys in the early stages of X-linked ALD. Newer treatments that may lower brain levels of VLCFA are being tested. Genetic research has identified the transporter proteins and their faulty genes, starting the path towards gene therapy. Finally and remarkably Lorenzo Odone is as far as I know still alive and aged 29. Not fitting too well with the dire symptoms and prognosis given above. The genetic test that can tell if someone is liable to get ALD still is not available so it appears that all the science that says it is genetic may be as much hot air as the gene supposed for autism. Rather handy to say its genes and not the toxic environment but it would be nice to have evidence and not hundreds of best guesses that can’t be tested for in advance. The history of the illness does go back for about 100 years and it is interesting that many cases turned up in the same area where Cruetzfeld found his neurological cases in the immediate area of where people were throwing around all kinds of chemicals for 3 years to destroy peoples brain cells. Fred Carno’s Army at work and Fritz Haber and his “Poisonous Cloud” of course. Strange that! A sufferer writes Actually there is another auto-immune disease that you can get from a flu shot. It's called Gullian-Barre Syndrome, or GBS. I have ALD, AMN, and s and have recently come down with GBS. Although I got my case from something other than a flu shot. I know people that have gotten their case from a flu shot. I don't know why but have been suspecting it was the mercury in the shot. You might want to talk to a neroulogist and see if that can help you. You want to get all the help you can with GBS it can really mess up your life. I was paralyzed from head to toe and on a vent for 8 weeks. Take care. Latest case from UK: South London Press Award - Sara Hunt The South London Press has followed the heartbreaking story of the Hunt family for years. , 15, was left deaf, unable to talk and barely able to see or move after he was diagnosed with rare genetic illness Adrenoleukodystrophy (ALD). Earlier this year his younger brother Ayden had a transplant after he started showing signs of the same illness. Thankfully his prognosis now looks good. Mum Sara has dealt with these difficulties with great strength and good humour, and even set up a charity to raise awareness of ALD. In one case once the sufferer was discovered the rest of the family was labelled with the same condition although clinically well. The result of this labelling may lead to abuse and possible death at the hands of doctors concerned and if ‘cured’ may get the credit for an illness they never actually had. That is if it truly is of a chemical toxic nature with some genetic inability to handle the toxic injections and pesticide laced food they eat? Genetic or Environmental ALD (Adrenoleukodystrophy)