Endocrine Awareness Project manager, ALD Life
Karen is the Endocrine Awareness Project manager for the UK charity ALD Life, who support patients and their families who are living with a diagnosis of adrenoleukodystrophy (ALD) and adrenomyeloneuropathy (AMN).
ALD is an X-linked hereditary condition which causes demyelination of the brain, which if not diagnosed and treated in a timely manner causes severe disability.
There are several phenotypes of the condition with childhood onset cerebral ALD being the most severe, affecting boys between the ages of 4 and 10.
Karen is a carrier of ALD and have two affected sons, one who died aged 8.