Those affected by leukodystrophy endure symptoms and deterioration that are difficult for the outside world to understand – these families and individuals can feel very much alone and lost in a world of constant change and new challenges.
A diagnosis of leukodystrophy is a testing time for family and friends. For some great strength can be gained from the subsequent rallying of family, friends and the local community. Sadly, not everyone experiences such direct and comforting support, and Alex TLC endeavours to fill this gap as best we can.
Professionally, it is equally difficult to equate how rapidly deterioration can occur in some individuals and the need to anticipate future requirements is not always appreciated.