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Adrenoleukodystrophy (ALD) is a rare genetically inherited degenerative condition. ALD is one of a group of disorders called the leukodystrophies where the fatty covering of the nerve fibres (myelin sheath) breaks down which prevents the nerves from working as they should.

There are various forms of ALD, but the two most common ones are childhood and
adult-onset X-linked ALD.

Childhood X-linked ALD problems generally occur in boys between the ages of four and ten. Parents start to notice that the child is having problems either with vision, hearing, school performance, behaviour or character changes. These problems can rapidly deteriorate and the child will start to lose the ability to walk, talk and swallow. Death will often occur within a couple of years of diagnosis, though some children do live for much longer.

ALD was made famous by a film called ‘Lorenzo’s Oil’ which told the true story of a couple’s fight to find a cure for their son who had been diagnosed with ALD. Lorenzo is still alive though bedridden and tube fed – he is in his early twenties. Lorenzo’s oil has not been scientifically proven to ward off the onset of ALD, though many ALD positive children take it as a precautionary measure. Bone Marrow Transplant has halted the progress of the condition in some boys, but can accelerate the progress of the condition in others.

Not all boys who test positive for ALD go on to develop the symptoms described above and some will lead full and normal lives.

The adult onset form of X-linked ALD is also known as adrenomyeloneuropathy (AMN). It usually begins between the ages of 20-35, though it can appear later in life. Symptoms include stiffness, weakness or paralysis of the limbs and problems with muscle coordination. In some adults there is deterioration of brain function. Symptoms tend to progress very much more slowly than with Childhood X-linked ALD.

Women carriers of the ALD gene can also suffer a mild form of AMN.

ALD is an incredibly cruel condition, robbing young boys of their lives. Mothers of affected boys not only have to deal with the loss of their child, but also have to live with the fear of developing symptoms themselves.

At present there is no government funding for research into ALD.


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