Snowdrops representing MLD Support Association UK

Support

How do we offer support?

MLD (Metachromatic Leukodystrophy) is a rare genetic condition but when it strikes it brings devastation to the entire family. Because it is so, many health and educational specialists will not have any experience of either the symptoms or the progression of the disease. Parents and families will often face the same dilemma themselves, and in young adults, either as a parent or a patient, the lack of knowledge can be very frightening.

 

Questions

MLD Support Association UK will endeavour to answer any questions put to us by either adults who are showing symptoms of the condition, or from their family members, and those of children thought to be suffering from the illness. To maintain privacy, we require all questions to be submitted via our ‘Contact Us’ system, and we will then summarise the question which will be displayed (under a coded ‘name’) in our ‘Support’ pages, in an ‘Advice wanted’ area.

 

Solutions

We might not be able to answer the queries directly, and will be helped by other parents or families who are, or have been, affected by MLD; alongside clinicians and researchers who are working in the field of Neurodegenerative Lysosomal Storage disorders. We will encourage an interchange of information between families, as they will often have experienced the same situation as others, either with the effects of the progression of the illness, or with the palliative or therapeutic treatments offered. Answers from this source will always be accredited to the writer although a coded ‘pen name’ will be used for the purposes of privacy.

 

Administration

MLD Support Association UK will not actively encourage direct communication between families, as the whole purpose of the web site is to share information and advice with everyone affected by MLD. When it is considered that a particular topic has been answered satisfactorily, it will be moved to an archived area, and the topic indexed for future reference.

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