Alex TLC is the only UK charity providing support and information to anyone affected by a leukodystrophy. We work closely with leukodystrophy specialists and scientists to promote early diagnosis, equitable treatment, and research.
With the team’s lived experience of leukodystrophy, we truly understand the challenges people affected by leukodystrophy face and we wanted to create a page for those with a recent diagnosis to provide information during this difficult time.
Leukodystrophies are genetic disorders primarily affecting the white matter of the central nervous system (i.e. the brain or spinal cord). The majority of leukodystrophies are degenerative and can result in a range of symptoms. There are over 100 identified leukodystrophies, with some so rare they are yet to be named.
LOO – KO – DIS – TRO – FEE
The information on our website is developed and checked by leukodystrophy specialists. On each of the individual condition pages on our website we have provided links to external information, websites, and videos from reliable sources.
It is important when accessing information that it comes from a reliable and reputable source as it can be difficult to separate fact from fiction. The information available on other websites can be generic and not condition specific. This often focuses on worse case scenarios, it is important to remember that not everyone’s journey or outcome will be the same.
For those with unnamed/unknown types of leukodystrophy we have a page on our website under a-z of leukodystrophy and the information in the condition management section is appropriate for all.
There may be a number of professionals involved throughout your/your loved one’s leukodystrophy journey. They have different roles in your care and can provide support to manage your condition, including symptoms and alternative treatments.
It is important to understand their role in your journey and the support they are able to provide. To find out about professionals involved, please visit our healthcare professionals page.
Genetic testing can be used to find out whether a person is carrying a specific altered gene (genetic mutation) that causes a particular medical condition. It may be carried out to diagnose a person with a genetic condition or determine whether a person is a carrier of a certain genetic mutation that could be inherited by any children they have.
Genetic counselling is different from psychological counselling. It is a service that provides support, information and advice about genetic conditions. It may involve learning about a health condition that runs in your family, how it’s inherited, and which family members may be affected.
To find out more visit our genetic testing and counselling page with further information.
We can provide advice on how to access leukodystrophy specialists, this is usually done by speaking to your GP or consultant involved in your care.
NHS England Inherited White Matter Disorder (IWMD) Service is a specialist diagnostic and management service for those with rare leukodystrophies. To be referred to the service you must speak to your consultant. To find out more, please visit NHS Patient Service & Registry
It can be challenging when professionals involved in your care do not have knowledge and understanding of leukodystrophy. This is most likely due to leukodystrophy being a rare condition. It is important to make them aware of our charity and the condition information available on our website.
We can speak to professionals on your behalf to explain what leukodystrophy is, and the potential difficulties you may face when living with the condition. Please contact us for further information, by emailing info@alextlc.org
Living with a rare condition, such as leukodystrophy, can be isolating. Many people find it useful to develop a support network to help you in your leukodystrophy journey.
Our Support Services Team provide one to one support which can be accessed via email, telephone or virtually on zoom. You can contact our team for support by emailing info@alextlc.org
We also offer individual counselling sessions with our fully qualified counsellor, to find out more about how to access sessions visit our counselling service page.
Our Peer Support Network can help with feelings of isolation by putting you in contact with others in a similar situation. To find out more visit peer support page.
Leukodystrophy symptoms can vary dependent on the type of condition and age of onset. Individuals within the same family can experience different symptoms, for example one family member may be severely affected while another experiences minor symptoms.
It is important to be aware that there is no way of predicting your or your loved one’s symptoms and how they will develop. A range of symptoms may be experienced by individuals at different stages of the condition. You can find out more about condition specific symptoms on our a-z of leukodystrophy page.
Many of the leukodystrophies have common symptoms. You can find out more on our symptoms and their management page.
There are a range of financial support options available for those with significant issues related to their leukodystrophy condition. If you’d like help understanding what financial support is available, please visit our benefits and grants page. If you need help to access benefits please contact info@alextlc.org
You can also apply for financial support through our grant programme, to find out more please visit our grant programme page.
We understand that you might be thinking about what practical steps need to be taken whilst living with a leukodystrophy. If you feel ready to explore the practicalities of living with your/your loved one’s condition please visit our condition management page. Please note, this page includes information about equipment and services for those with more advanced leukodystrophy symptoms.
