Developing support resources for children and young people

There is a distinct lack of support resources for children and young people who are impacted by leukodystrophy, either being affected themselves or with an affected family member. The support available is often focused on parents and carers, which is why we are developing support resources for children and young people.

Our Children’s Book for ALD (Adrenoleukodystrophy) is the first in a series of books we will be producing. We will continue to update this page as further resources and books are developed.

 

Children’s Book for ALD (Adrenoleukodystrophy)

We have created a Children’s Book to support the siblings of children diagnosed with childhood cerebral adrenoleukodystrophy (CCALD). The primary goal is to support children and their families to build emotional resilience, and openness to talk and ask questions about a diagnosis of CCALD.

The diagnosis of a rare condition can be a scary experience, especially a diagnosis such as CCALD. We hope our book will help make a CCALD diagnosis more relatable for children, providing child friendly advice and coping mechanisms. The book is a supportive tool for affected children, siblings, and their families. It will be a tool parents can utilise in family discussions, a story they can explore and discuss together. It will also act as a resource that both Alex TLC and other medical professionals can recommend to families to utilise.

The book is free to access and is available both electronically and as a hard copy.

To access the electronic copy, please click on the link: Children’s Book

To order yourself a hard copy please contact info@alextlc.org

Why is the book important?

“I think the support is already there for the person with ALD, but not the siblings.”

“You’ve got the nurses and the play specialists and everyone’s very focused on the child with ALD, making sure they are alright. The siblings can get forgotten about.”

“Siblings are living with the reality; overhearing conversations and see what’s going on. Whereas sometimes, as the child with ALD deteriorates, they are less aware of what’s happening.  A book would be better to be targeted at to try and explain it to the sibling.”

“It puts a lot of pressure on the parents as they then have to explain to the children the things, and as they are their children they want to protect them and change the wording.”

Alex - The Leukodystrophy Charity

Leukodystrophy Awareness Month

Leukodystrophy Awareness Month takes place every year throughout the whole of September.

It is a time for everyone affected by a leukodystrophy to come together and raise awareness about these devastating rare conditions. It provides an opportunity to raise awareness of leukodystrophy, including the symptoms of leukodystrophy, the impact of the condition on individuals and families, and what we do as a charity.

Each year we roll out a different themed campaign for people to get involved with. In 2021 we shone a light on the different types of leukodystrophy and last year our focus was on getting to know our community members.

To find out more, including what our campaign was this year, please visit: Leukodystrophy Awareness Month

Alex - The Leukodystrophy Charity

#ScreenOurBoys – Newborn Screening Campaign

GET ADRENOLEUKODYSTROPHY (ALD) ADDED TO THE UK’s NEWBORN SCREENING PROGRAMME

We are campaigning for Adrenoleukodystrophy (ALD) to be added to the UK Newborn Screening Programme. The National Screening Committee (NSC) is responsible for making decisions around which conditions are added to the UK newborn screening programme.

For information about our campaign please visit our Screen Our Boys Campaign page.

We have worked in collaboration with researchers to conduct research to provide evidence to support the need for ALD to be screened at birth. This included our Psychosocial Impact Study with Sheffield Hallam University and our Newborn Screening Study with Genetic Alliance. We are waiting on the publication of the Psychosocial Impact Study report and will share this once available.The Genetic Alliance summary report is available to view here: NBS Study Report

We will continue to share updates and opportunities for involvement in our campaign on our Screen Our Boys page.

 

Alex - The Leukodystrophy Charity

Raising awareness of the link between Addison’s Disease & Adrenoleukodystrophy (ALD)

Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN) are important potential underlying diseases to consider in boys and men with primary idiopathic (unexplained) adrenal insufficiency (Addison’s Disease). The majority of boys with adrenal insufficiency are routinely tested to see if ALD is the cause. However, this does not always happen, particularly for adult males. We are working with specialists and the Addison’s Disease Self Help Group (ADSHG) to ensure testing for ALD in all males with adrenal insufficiency becomes routine practice in the UK. The Addison’s Disease Self Help Group (ADSHG) has medically verified information to help you live with this condition, including downloadable information for your GP, hospital emergency department, school or work place.

Alex - The Leukodystrophy Charity