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.
We can provide advice and support for family members and carers. This can be accessed over the phone, email on zoom. Through our peer support network, we can put you in contact with other people who are supporting someone affected by a leukodystrophy.
Please visit our how we support you section for information on all the many ways we can help.
We urge anyone involved in the care and support of individuals with leukodystrophy to seek out advice by contacting us.
Looking after a person with severe disabilities is exhausting. Nobody can do it all on their own. And the normal demands of everyday life don’t go away. So, when your family member becomes disabled it is important to get help, both for your own sake and so you can be there for the rest of your family. It’s also good for the person’s own wellbeing to have contact with other people.
To find out more about care options available to you, please visit our care information page.
It is important to take care of your own mental health. You can access counselling sessions free of charge with our counsellor. This service is available to all family members and carers, who are over the age of 18.
To find out more, visit our counselling service page.
