Juvenile MLD help and support

Juvenile MLD

Patients who start to develop symptoms from around 3 to 16 years of age often show initial impairments in fine motor skills and concentration and may develop behavioural problems, particularly at school.

They begin to find it difficult keeping up with their peers and may sometimes be referred to a child psychologist or psychiatrist as a psychiatric condition or depression is suspected. As with Late-infantile MLD diagnosis is often protracted with many wrong suggestions. Unfortunately, this delay often means that the only treatment so far available, Bone Marrow Transplant, becomes impossible as the symptoms are too far advanced.

In the early stages children often suffer increasing difficulties with movement and co-ordination and walking. They can develop slurred speech and suffer incontinence. The situation may stabilise for months or even years in some cases, but the reason for this is not yet known. However, as symptoms advance, individuals develop signs of neurological involvement such as involuntary flexion or extension of the arms and legs, tremor, muscle rigidity and, eventually, they lose the ability to walk. This is followed by a decline in motor and cognitive function and, unfortunately, the final stage of the disease follows that of the Late-infantile form of MLD, but generally over a longer period of time.

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

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

Contact

MLD Support Association UK
Floor 5
Amphenol Business Complex
Thanet Way
Whitstable
CT5 3SB

Tel: 07977 440809
admin@mldsupportuk.org.uk