So, I know who I am, and what I feel. Of course, I do. So do you, maybe. Nonetheless, many of the things that happen to a body if you decide to test drive a new disease can be uncomfortable, scary and often, embarrassing. Not good, I tell you what.
Over time, I gained acceptance of who I am, even the strange AMN-associated quirks.
When I talk to younger guys with AMN, I hear combinations of confusion, fear and anxiety.
Based on my own experience, these emotions seem pretty reasonable. What if there was a short cut, a way to hear afflicted men speak with candor about their lives and how they are impacted by AMN?
What I am sharing below is not going to work for everyone. Depending on your level of acceptance, you may find it pretty depressing to read this. Feel free to take a pass if you are not ready.
Alternatively, if you want to know what it is like, either as an AMN patient, or just as a curious observer wanting an idea of what it is like to have AMN, I encourage you to have a look at the transcript of a 7 May 2021 FDA Listening Session for Adrenomyeloneuropathy (AMN).
Based on my own 25-years’ experience as an AMN expert, I found it to be frightfully accurate.
One thought on “So, What it is really like to have AMN?”
That was intense and eye opening, but also valuably informative. Thank-you for sharing that. Some of those case stories were hard to read, but the last one was heartbreaking. I hope the treatments and cures that are being hoped for can be found soon.