I was finally diagnosed with a very rare neurological disease a few years' ago. It is part of a leukodystrophies disease and is called Alexanders Disease (https://rarediseases.org/rare-diseases/alexander-disease/). It is incurable and degenerative and has devastated my life as it used to be and I'm now totally reliant on carers' helping me with personal care, making food and drinks and generally supporting me through this debilitating time of my life as I have great problems with my mobility.
Helping Alex Raise Awareness and Funds
Beneficiary
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Alex, The Leukodystrophy Charity Charity no. 1106008 Email: info@alextlc.org Tel: 020 7701 4388 |
Alex, The Leukodystrophy Charity (Alex TLC) provides invaluable support and information to people affected by leukodystrophy.
The charity was founded in 2004 by a mother whose two sons had been diagnosed with leukodystrophy. She recognised the severe lack of information and support available and wanted to make sure that no one had to face leukodystrophy alone.
Leukodystrophies are rare genetic disorders that affect the white matter of the central nervous system (ie the brain or spinal cord). They affect people of all ages and backgrounds, most notably children.
There are over 100 different types of leukodystrophy, which are usually degenerative and cause symptoms such as impaired mobility, vision, speech and hearing, incontinence and loss of cognitive skills. In many cases, this sadly means a reduced or limited lifespan.
