Submit a Written Comment
Submit a comment below on the topics we will be discussing throughout the EL-PFDD meeting. Comments should be submitted individually.
Of all the symptoms of adrenoleukodystrophy, which 1-3 symptoms have the most significant impact on you or your loved one’s life?
How does adrenoleukodystrophy affect you or your loved one on best and on worst days? Describe your best days and your worst days.
Are there specific activities that are important that you or your loved one cannot do at all or as fully as you would like because of adrenoleukodystrophy?
How has your loved one’s ability to cope with the symptoms changed over time?