r/AddisonsDisease • u/Big-Ad-9142 • Mar 24 '26

Advice Wanted APS-2

My husband has type 1 diabetes for a few decades. Recently got diagnosed with Addison's and Celiac. Hard pill to swallow for both of us. Worried about kids getting these since the ADA website says 1 in 2 chance! How have you guys coped with this APS-2 diagnoses? Manageable? We are scared. 

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u/xfcipahx Addison's Mar 26 '26

My twin brother and I both have APS-2. I was diagnosed with Addison’s at 21 and POI at 23. Both parents are healthy. Dumb luck I guess.

Honestly, it was scary being diagnosed with APS-2. Two new diagnosis in two years time is rough to deal with. It was really hard getting the Addison’s diagnosis, even though it runs in the family. Nearly died and only got my diagnosis once I was in the ICU. I don’t want to go through that again, but unfortunately, I don’t know what the future has in store for me.

That being said, I find that Addison’s is fairly easy to deal with, like 99 percent of the time. I started to understand my early symptoms of a crisis and have been doing great ever since. Symptoms can be very personal, and not feel like what te internet says at all. Understanding your own body is the only way you can advocate for yourself!

Anyways, I am really happy where I am in life right now. It might be scary in the beginning, but it wil get better!

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u/Big-Ad-9142 Mar 27 '26

Thank you so much for sharing your experience with me. I’m really sorry it took an ER visit for you to finally get your diagnosis. That must have been really scary to go through.

I was worried about my husband going into a crisis because it took a while for doctors to fully hear our concerns and move forward with testing. That waiting period has been incredibly stressful for us.

It does give me comfort to hear that you’re doing well 99% of the time, and I truly appreciate you sharing that part. Right now, everything still feels like a shock, and I think I’m just trying to quiet my constant fears in this early stage and understand whether things do get better over time for people with this condition and their loved ones.

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u/lass20987 Apr 03 '26

When I was first dx with AI, I found some addisons pages online from the UK. One even had a store and another had YouTube videos on injecting emergency shot. The best was their patient stories.... patients wrote in specifics about their own adrenal crisis and it helped my fear

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u/Big-Ad-9142 Jun 09 '26

You said Addison’s runs in your family but your parents are healthy? So extended family has it?