Adrenoleukodystrophy (ald) Case
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One in 20,000 males are affected with the disease known as Adrenoleukodystrophy(ALD), or in simpler terms it is known as the degeneration of myelin disorder. When there is no more myelin, then the nerves are not able to function the way they are suppose to or may not function at all. One important thing to know about myelin is that once it is gone it cant grow back. There is no way for it to reproduce its self and sometimes the disease can affect the males so bad that simple things like talking, seeing and hearing are never gained back.
ALD only affects boys starting at around the ages of 4-8. This disorder is carried in the X chromosome, so that makes the mother the carrier of this disease and explains why only males can have ALD. This disease works at a pretty fast rate leaving many boys completely disabled in 6 months to 2 years after being diagnosed. Yes many boys can live with ALD, but many do die if not diagnosed and treated. The way that ALD works is it doesnt allow for fat molecules to be broken down. Thus resulting in a huge build up that can clog up the nervous system, adrenal glands and testes.
There are many symptoms that come along with ALD, but here are a few just to see how the males are affected. For starters a mother now these days can be tested to see if she is a carrier of the disease. But if the mother wasnt checked then these are some characteristics to be looking out for. She can look for loss of control, lack of brain and body coordination, difficulty in school due hyperactivity and that seemed to be the first few symptoms to look out for. Some symptoms that come later on in ALD can be a lot worse and lead to loss of sight, hearing, ability to swallow and paralysis. Once this starts to happen that means that there has been a great amount of damage to the myelin and most of that damage cannot be reversed.
The male affected is able to be treated for ALD with what is known as Lorenzos oil or stem cell transplantation. Any male can be treated with Lorenzos oil and what it does is help reduce the levels of fatty acids. But with the stem cell transplantation only a few of the males are able to qualify for this procedure depending on how much myelin has been affected. The young males are also put on a life long diet of eating food that is low in fatty acids.
Till this day there hasnt been a cure created that will help those who are being affected with ALD, but with the way the world is advancing everyday with new medications, surgeries and technology it is only a matter of time until someone out there is able to come up with the cure that will help males put an end to this disease. But until then as long as they are being treated upon their diagnosis there is no reason at all why there arent able to live a long and happy life.
ADRENOLEUKODYSTROPHY
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