Leukodystrophy - support group?
My 2 year old son has recently been diagnosed with an undiagnosed form of leukodystrophy. By saying undiagnosed, any forms of the disease that can be diagnosed through chemical analysis of blood or urine samples have been eliminated. Is there a support group or a "contact a family" group in Ireland relating to any of the family of leukodystrophy diseases with whom I and my wife can get in contact?
The term leukodystrophy is of Greek origin, “leuko” meaning white and “dystrophy” meaning abnormal development. The various forms of leukodystrophy are rare inherited conditions that result in progressive degeneration of the white matter in the central nervous system. I am not aware of the existence of any support groups in Ireland for any of the many forms of leukodystrophy. You might find it helpful to contact a group in the UK known as Climb (Children Living with Inherited Metabolic Diseases), which is a national umbrella organisation concerned with various inherited metabolic disorders. You can access their website at: http://www.climb.org.uk/. I understand that they have a branch in Northern Ireland. You might also find it useful to access the following link, which lists various self-help and support groups that might be relevant to your child’s condition: http://www.webhealth.co.uk/Self_Help_and_Support_Groups_R/Metabolic_Diseaese_Children_Se/metabolic_diseaese_children_se.html.