These pages provide generic condition management information. The information is not condition specific, and in some cases the information may not be relevant to all conditions.
For specific condition management information, please visit our individual condition pages in our A-Z of leukodystrophy.
It is important to consider the practicalities of living with your/your loved one’s condition. There are a range of services that can provide support with different areas of your care. There is equipment that is there to assist you/your loved one in functions of living that may be more difficult since diagnosis.
We have developed a range of informational resources which we hope will help with the management of yours/your loved one’s condition. We will continue to create resources and add them to our website. If you have suggestions for any future resources, then please email info@alextlc.org
There may be a number of professionals involved throughout yours/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.
We understand the challenges faced when supporting a loved one who is affected by a leukodystrophy. As a charity, as well as providing support for affected individuals, we also support their friends and families. We have created a page with additional information and links that you may find helpful. If you would like to seek support from us directly, please do not hesitate to get in touch by emailing info@alextlc.org
