I am going to share this with everyone.

[artortega78]

It is from ALD Connect. It is the summary of FDA listening for AMN. aldconnect.org/wp-content/u...

[SongStream]

Art, thanks for posting this. I was thinking the same thing. The AMN journey of all who participated in this panel resonated completely with me. If I ever want someone to know how it feels living with AMN, I'd refer to this.

[COwithAMN Administrator AMN EASIER Volunteer]

I agree with Songstream, and thanks for posting this. The testimonies of these patients vividly illustates two things for me. First, that the effects of AMN are very much the same for all of us. Second, that the severity of the symptoms does vary a good deal from person to person. Overall, though, it gives a very good first-hand account of what it can be like living with AMN.

[COwithAMN Administrator AMN EASIER Volunteer]

Further thoughts after reading these patient stories.

A common complaint was about the fear and anxiety associated with urinary accidents. I can relate 100% to that, especially 15 or more years ago when I was still going out on business calls. I wish someone had advised me about self-catheterisation and also using a urine bag with a penile sheath, which I use now. The latter especially means that you no longer suffer from worries about leaks.

The second observation from the patient stories is that they are all about men. We need clinicians to come forward with more stories about the special problems women face, especially as evidence shows that women may suffer more from incontinence issues.

[SongStream in reply to COwithAMN]

I also noticed that neuropathic pain is mostly prevalent in women.

[Abcd1Kat in reply to COwithAMN]

The panel intentionally did not include women, as women have a similar yet different set of symptoms and rarely adrenal insufficiency so AMN is not really an accurate name for what women suffer. Women have ALD (not “carriers”, which implies it’s a recessive x-linked disorder, which ALD is not) and in this 90-minute opportunity to describe AMN, we didn’t think it would be helpful to confuse the issues. That said, I completely agree that the community needs to bring women’s stories into the light and help define the diesase for women so that women can get treatment and pharma will develop treatments FOR women (instead of running trials for men and expecting women to get it several years later when it can be written off-label for us). Just my 2cents 💙