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Unnamed Leukodystrophy 

Alex TLC supports everyone with a leukodystrophy, even if the cause or name is not known, providing support, general advice and access to specialists, but will not be able to give disease-specific information if the cause of your leukodystrophy is not known.

Newly diagnosed?

A new diagnosis can be overwhelming as it brings unique challenges and adjustments, but it is important to remember that you are not alone.

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Genetic counselling

Genetic counselling is essential for affected families due to the inheritance pattern of leukodystrophies. This is available at hospitals and Regional Genetic Centres. Please contact your doctor if you have any questions.

Learn more about genetic testing and counselling here.

More symptom information

If the cause of your leukodystrophy is not known or if your condition is so rare that it has not been given a name, it is difficult to predict what your symptoms will be.

Leukodystrophies are genetic disorders primarily affecting central nervous system white matter, and often present with similar symptoms. Common symptoms of those with a leukodystrophy are described in our Symptoms and Treatment pages; this information may be useful to help you manage these. Not all leukodystrophies are affected by these symptoms.

Treatments

Although there is currently no specific treatment for this leukodystrophy, there is condition management information that may be useful for you in managing your or your loved one’s leukodystrophy.

Current research

There may be a current clinical trial, natural history study or patient registry for your condition. Check our current research page and ask your specialist doctor for more information.

Scientific research

We understand that research is a significant priority and source of hope for the leukodystrophy community. There is more research in leukodystrophy now than ever before. Alex TLC actively promotes and supports research in a number of ways.

Every month we update our database of research summaries with the most recent research. This includes summaries of leukodystrophy articles, clinical trials and pharmaceutical press releases. Our summaries allow our community to read about relevant recent research developments in a format that is easily understood.

How we can support you

Learn about the ways in which we can help in the how we support you section. When you or a family member been diagnosed with a leukodystrophy it may be difficult to know where to go for more advice – this information could help.

How we support you

Services and equipment

Our services and equipment section is here to help leukodystrophy patients and their families manage their condition. All information is based on our knowledge of UK services, however, our team are happy to receive support requests from other countries – email us.

Services and equipment

Healthcare professionals

You may be introduced to many different medical professionals which you may find confusing. View our guide to the health and care professionals you may encounter, with short descriptions about what they do.

Health and care professionals

Other resources

Links to useful information

We take great care in only selecting credible, useful links and resources, however we cannot be held responsible for the content of external websites or other sources.

View the full list of leukodystrophies

A-Z of Leukodystrophy