Inherited White Matter Disorders Service
What is an IWMD?
Inherited White Matter Disorders (also known as leukodystrophies) are genetic disorders that primarily affect the white matter of the nervous system (the brain, spinal cord and peripheral nerves). Many, but not all, IWMDs are progressive diseases where there is increasing neurological impairment affecting mobility, speech, feeding, vision and hearing and cognitive skills. For some disorders, this may result in a limited or reduced life span.
There are many different IWMDs and how someone is affected depends on the cause of the white matter disease. IWMDs affect males and females of all ages and ethnic backgrounds.
Please get in touch with the team via: bwc.iwmd@nhs.net
What is the IWMD service?
The Inherited White Matter Disorders (IWMD) Diagnostic and Management Service is a formally commissioned highly specialised service. There are 4 centres across England, 1 for adults and 3 for children.
We provide a high-quality service with lots of experience. Referrals are accepted from tertiary neurology, metabolic or clinical genetics services, secondary care services, or other specialised services. Referrals are accepted where there is suspected or confirmed rare IWMD and the patient meets the inclusion criteria outlined in the national specification.
The aim of the service is to provide advice and guidance to local hospitals in the diagnosis and management of children with suspected or confirmed IWMD. In the majority of cases, the patient will attend local services for tests and scans. In some cases, a patient will be supported to attend a clinic in Birmingham for review by a specialist team.
The specialist team includes consultants in neurology, metabolics, clinical genetics, and neuroradiology, as well as a neurology nurse and neuropsychologist. Each has experience with diagnosing and managing patients with IWMDs in a large number of cases
Patient Support Groups
Alex, The Leukodystrophy Charity (Alex TLC) was set up in 2004 by a mum of two sons diagnosed with adrenoleukodystrophy (ALD), the most common of the leukodystrophies.
Alex TLC has a wealth of lived experience and knowledge to help you through all aspects of living with leukodystrophy, whether you are newly diagnosed or were diagnosed a while ago. We are here to support everyone affected by a leukodystrophy diagnosis, providing practical and emotional support as well as accurate and reliable information.
We want everyone to be able to access the help they need – our support is accessible online, by email, phone, or in person.
To find out more please visit the Alex website or email info@alextlc.org