RECEIVING A LEUKODYSTROPHY DIAGNOSIS IS LIFE CHANGING
The most important thing to remember is that you are not alone.
You will have many questions along your journey, and the ULF is here to help you find the answers you seek or to offer the support you will need to keep going. This page is a guide on navigating some useful tools available on the ULF website to get you started. Please do take the time to browse all of the sections of our website as we do have a lot of other information that could be valuable – this is page is just to give you a head start on some of our most frequently visited pages for people who are newly diagnosed.
BUILD YOUR TREATMENT TEAM
First things first – are you looking for a specialist? The Find a Physician page can help you find a doctor near you. Unfortunately the ULF is still looking to identify specialists in each of the 50 United States, but there are options for patients who may not have a physician nearby. Reach out to us through our Contact Us form for more guidance.
SPEAK WITH A GENETIC COUNSELOR
After choosing a physician, you may need to speak with a genetic counselor. Genetic Counselors are key in identifying the specific leukodystrophy type diagnosis, and continue to be very important for affected people who are looking to expand their families. There is a Genetic Counseling FAQ to answer some general questions, but your physicians should be able to provide you with referrals to counselors in your area to speak with you about your specific needs.
Invitae offers no-cost genetic testing for families in the United States, Canada, and Australia, who are at risk of a leukodystrophy diagnosis. You can find more information here: https://www.invitae.com/en/leukodystrophies/
LEARN WHAT YOU CAN ABOUT LEUKODYSTROPHY AND YOUR SPECIFIC TYPE
Start with “What is Leukodystrophy?“, but also, here is a leukodystrophy FAQ page, and a leukodystrophy 101 video to get you started. This information is meant to be broad to describe the leukodystrophy disease family as a whole. There are over 50 types of leukodystrophy and figuring out what specific type can help your medical team determine what treatments are available. Once you have a type diagnosis, you can find more information on your specific type here. Our type list is currently under review and we are adding more information, and adding types that have either changed names or are newly identified. We will eventually have information on all of these types as we continue to keep our website updated! We appreciate your patience as we gather this information for you.
FIND INFORMATION ABOUT CLINICAL TRIALS
The ULF cannot offer specific medical advice, as we do not have any licensed physicians on staff. Any treatment options will need to be discussed with the professionals who have knowledge of the patient’s full medical history. But for those who are interested in clinical trials, there could be options out there for you. The ULF keeps this page updated with trials that we find, but it is always great to keep an eye on ClinicalTrials.gov for the USA patients, or the Clinical Trials Register for Europe, which are the most up to date places for information.
FIND SUPPORT FROM FAMILIES LIKE YOURS
The ULF hosts an annual meeting for families to connect, as well as meet with the top physicians from all over the world. You can find more information on our Family Conference here! The ULF is unaware of any leukodystrophy support groups that meet in person outside of our conference, but there are some wonderful communities through Facebook groups where you can connect with families from all over the world. You can find a list of these groups here. You can also reach out to the ULF office and see if we can connect you with a family personally through our Contact Us form.
This is the beginning of your journey, and the ULF is always here to provide you with guidance however we can. You are not alone.