So, What it is really like to have AMN?

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.

Published by bradleygillespie

I am just a guy with a disease called adrenomyeloneuropathy. I want other guys with the disease to see the good parts of disability. Not the gloom. Not the doom. Make sense?

One thought on “So, What it is really like to have AMN?

  1. 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.

    Like

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