I have noticed that we have had several new members join our forum in recent months, which is of course wonderful! Some of these members have written detailed introductory posts about their diagnosis and experiences with ALD/AMN, but others only post infrequently, and we don't really know anything about their story. I thought it would be useful to have a single post dedicated solely to sharing some basic details about each of our histories with AMN. I think this could be a useful reference tool, especially as we continue to add new members.
As much as possible, please try to limit this post to these personal details, and if you have a specific question for another member regarding a detail that they share, please write a new post to discuss this. Below are the details that I think would be most helpful. I will respond with my own to begin. Of course, all of this is completely voluntary, and you are under no obligation to share any detail about your personal life. I would like to keep this very basic, but if there are other details that you feel should be added, please let me know, and I can edit this post accordingly.
Country or geographic location:
Diagnosis: (symptomatic female AMN, adult cerebral ALD, Addison's-only, AMN, etc.)
Addison's Disease: (yes or no)
Genetic mutation signature: (if known)
Family history or de novo mutation: (if known)
Age at which earliest symptom was present:
Age at diagnosis:
Year of diagnosis: