Adult MLD

Adult MLD is the rarest form of Metachromatic Leukodystrophy and, generally, the most difficult to diagnose. Early signs and symptoms in adults who develop MLD are frequently an apparently sudden and unexpected poor performance in school or other academic work. Initially, this decline seems to be very slow and almost imperceptible. Along with the slow decline in intellectual and cognitive abilities sufferers personalities change and they can become emotionally unstable and experience lapses in memory. Again, unfortunately, this is normally initially misdiagnosed as a psychiatric illness, frequently schizophrenia and medication is given which, generally exacerbates the problems. Getting a person suffering from Adult-MLD away from a psychiatrist and to a neurologist seems to be the only hope of getting the correct diagnosis.

Sufferers of Adult-Onset MLD can benefit most from Bone Marrow or Stem Cell Transplant as their degeneration is at a much slower pace. Indeed, both in the UK and the USA there are now a fair number of cases which have been extremely successfully with the disease showing no progression some 20 years later. However, this is dependent on the sufferer being pre-symptomatic or only having mild symptoms e.g. no paralysis at the time of the BMT. Early diagnosis is the key here.

Without intervention, as the peripheral nervous system becomes involved, movements may become clumsy and they may become incontinent. Paralysis of the arms and legs develops progressively. Seizures also become a problem and, in the final stages, affected individuals may reach a vegetative state.

About us

MLD Support Association UK was set up to bring hope to families in the fight to eradicate Metachromatic Leukodystrophy (MLD). Our aim is to provide support by way of shared information from people in similar circumstances who have already experienced the effects of the condition and/or any treatments available.

MLD Support Association UK

MLD Support Association UK is a
Registered Charity Number 1150542

Professor Timothy M Cox, MD, FRCP, FMedSci
Suzi Digby (Lady Eatwell) OBE
Iain Stewart MP


MLD Support Association UK
Floor 5
Amphenol Business Complex
Thanet Way

Tel: 07977 440809