Communication from ALD Life: importance of the link between adrenal failure and adrenoleukodystrophy (ALD)

In 2001, Alex and Ayden Hunt, from East Dulwich, were diagnosed with adrenoleukodystrophy (ALD). Alex deteriorated quickly to a semi vegetative state, and his brother Ayden was treated by bone marrow transplant to prevent him suffering from the same devastating symptoms as Alex. Sara Hunt, their mother, found it extremely difficult to get the support and advice she needed to help her deal with her sons’ conditions. Subsequently, she decided to set-up ALD Life, a patient support group that aims to provide a hub of support and advice about the disorder to affected patients and families in the UK, as well as providing financial support for those affected and helping to fund research.

While working with medical specialists and endocrinologists and listening to patients and families, ALD Life has found that many medical professionals, patients and families lack awareness of the link between adrenal failure and adrenoleukodystrophy. Dr Colin Steward, Consultant in Haemopoietic Stem Cell Transplantation for Genetic and Metabolic diseases at the Bristol Royal Hospital for Children, explains why spotting this underlying diagnosis can make a critical difference to patients and their families:

http://www.aldlife.org/wp-content/uploads/2013/05/Dr-Colin-Steward-on-why-spotting-diagnosis-can-make-a-critical-difference-to-patients-and-their-families.pdf (PDF)