ALD Family

10th December 2014

My mother is a carrier and sufferer of ALD. She had 3 boys and 3 girls. The first born (my Brother , died of ALD back in the 1950’s when ALD was unknown. He was diagnosed with Sonia dysentery and the desease went unnoticed until my nephew became ill in the mid 1990’s. Being first diagnosed with menengitis and eventually being put on a diet of Lorenzo’s oil before having a bone marrow transplant which really saved his life. It was then we were all tested for the genetic defect. My mother passed the ‘bad’ X on to two of the three girls. One of whome has passed the desease on to two of her three children (Boy and Girl). The boy, my nephew, has now developed the adult form and is suffereing badly as we speak. The girl, my neice, has just started university and has said she does not want children as a result of the news. My two sisters and mother all have symptoms of the female form in varying degrees. My mother is unable to walk at all now and is in constant pain. My younger sister is at her wits end and does not know what the future holds for her. Life goes on ……….. Dave


18 hours ago

ALD Life

We are delighted to announce that on the 15th May 2019 ALD Life will become Alex, The Leukodystrophy Charity (Alex TLC), able to support people with all Leukodystrophies, where no other support is available.

We’ll still be providing people with ALD and AMN the high-quality information, support, services and networks they already expect from us, but we want to help people with similar conditions and their families to have access to these too.

We will be sharing more information about the launch in the coming weeks, so stay tuned!

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