Adrenoleukodystrophy is a rare terminal illness which is usually
only detected when a young boy shows symptoms of the illness, by
which time it is too late to try and save his life. Ironically it
is when ones brother becomes ill that it is possible to test other
males, and if they do not show signs they can be checked and monitored, and
if signs of ALD are developing it is possible to halt the disease by
carrying out bone marrow transplantation.
Symptoms of ALD are, but not limited to:
Declining schoolwork
- Check handwriting
- Child becomes bored
Loss of vision
- moves head rather than using peripheral vision
Poor speech declining until lost
Seizures
Loss of hearing
Dementia
Loss of mobility and use of limbs
Questions you may want to ask as a parent if your child is diagnosed with this cruel disease
Where does it come from?
Females carry the gene but rarely get any symptoms.
Mothers can pass this to a daughter or son.
Fathers who carry the gene can not give this to a son only a daughter.
To find where the gene comes from there are blood tests that can be carried out.
It is advisable to get your family members checked.
Example: Boy diagnosed – brother and sister checked. If boys mother has brothers and sisters they should be checked and if they also have the gene their children too.
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