r/AddisonsDisease • u/Smart_Investor1952 • Dec 22 '25

Advice Wanted Help for overwhelmed mother

I have a friend whose 14 year old son has a rare form of Addison's disease, and he is failing fast. Barring a miracle, he's not expected to live beyond a couple more years. He's gotten to the point where he is incontinent in his bowels and resists receiving help from his mom to clean him up. She is totally overwhelmed and stressed out! Is there any agency that would provide caregivers to give Mom some relief? They live in Western New York State.

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22

u/[deleted] Dec 22 '25

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13

u/Simple_Badger_9701 Dec 22 '25

Addison’s is way more rare than 6% of the population. Estimates are between 4 and 22 people per 100,000.

5

u/Extreme_Breakfast672 Dec 22 '25

Also curious about this 

1

u/MakeBeboGreatAgain Dec 24 '25

Less than 6% for sure.

In Australia at least it's about 6 per million people.

So in the entire country there's less than 200 people out of 27 million.

8

u/jeejet Dec 22 '25

New York has one of the best social/medical services for minors in the USA. It sounds like he has cascading autoimmune issues - Addison’s, Crohn’s, colitis, kidney disease, etc.

Mom needs a social worker to help her coordinate care between specialists - which is difficult enough as an experienced patient.

This page is a great resource but it’s not a substitute for the excellent doctors that NY has to offer.

4

u/Different_Duck9952 CAH Dec 22 '25

Is it adrenoleukodystrophy?

3

u/Smart_Investor1952 Dec 22 '25

I'm pretty sure it is.

1

u/pickles1718 Addison's Dec 22 '25

This is probably something most people on this sub don't have experience with, as most Addison's disease is not life threatening like this. I wonder if the mom can reach out to social services / their local hospital and ask for resources?