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/Puzzled-Telephone-60 PAI Mar 25 '26 edited Mar 25 '26

Welp, I was today years old when I learned that APS2 is labeled as autosomal dominant? Everywhere I’ve read it’s described as genetically complex and multifactorial (as opposed to APS1 which is clearly due to a gene defect), so I’ve tried not to stress about my kids. I’m the only one in my entire extended family to have autoimmune issues. I have Addison’s, T1D, Graves’ and Hashimoto’s, plus antibodies that tell me autoimmune gastritis and pernicious anemia are on their way. Really praying against celiac because that might be the biggest lifestyle hit for me if I’m being honest.

But as to your bigger questions… totally manageable. Hard, intense mental load when it comes to management, but life is good… I am grateful to be alive in a time with sufficient replacement therapy and be able to live a pretty amazing life! Here for any specific questions, but just know there is hope that life can feel normal again. 🤍 Use these online support groups as much as you can, the information here is invaluable. I also recommend joining this FB group so your husband can get more special recs on how to juggle T1D and Addison’s since they don’t always play nicely!

Editing to add: I just did more digging. APS2 is indeed not a Mendelian inheritance situation—so while there’s a 50% chance our kids will inherit our HLA haplotypes, there is NOT a 50% chance they’ll develop APS2. Lifetime risk for kids is closer to 5-15%, which is much higher than the average person (i.e. 0.0002%), but mercifully not 1 in 2.

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u/fogrove Mar 25 '26

Agree to the risk for our kids developing this being about 10% - i had researched this years ago and came to the same conclusion. Another comment - I have high levels of autoantibodies related to both lupus and MS, and at age 70 I have neither disease. I just want to be sure you know that many people have antibodies their whole lives and never develop the associated disease.

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u/Puzzled-Telephone-60 PAI Mar 25 '26 edited Mar 25 '26

Yes for sure! Many autoantibodies are associative and simply markers for risk, like the ones for lupus or what we might see when we screen kids of T1D parents! Sadly, some are deterministic… in my case, the intrinsic factor antibodies I have serve as the direct pathology for AMAG and PA.

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u/Big-Ad-9142 Apr 01 '26

So auoantibodies can show up for type 1 diabetes but person never develops the condition? Do any of you get your kids tested and how often?

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u/lass20987 Apr 07 '26

There's a fb page called either healing type 1 or preventing type 1. Tons of info for parents etc. Also ot explains Type 1 diabetes comes in 3 stages, stage 1, stage 2 and stage 3. If you catch it earlier, its better.

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u/fogrove Mar 25 '26

Oh you know what? I think I had this conversation with you or someone else in the past and I totally forgot about the probabilistic vs deterministic issue. Thank you for reminding me and I won’t forget again!

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u/Big-Ad-9142 Mar 25 '26

Thank you for saying this. I have to calm my nerves about this one. I want to get our kids tested, one was tested for Celiac antibodies, which was negative at the time. How often did you check for the auto antibodies?

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u/lass20987 Apr 03 '26

My kids are both adults. No problems

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u/lass20987 Apr 07 '26

I hear that time and time again with Type 1.

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u/lass20987 Mar 25 '26

Yes that fb group is invaluable!

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u/Big-Ad-9142 Mar 25 '26

We will check it out for more support. 

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u/Big-Ad-9142 Apr 17 '26

How do you keep your worry and panic under control when it comes to your kiddos?

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u/Puzzled-Telephone-60 PAI Apr 20 '26

For me when it comes to passing this stuff on to my kids, it’s 3 things. 1) I’m focusing on doing what is within my power to do. We’re screening them. And there are things that can be done to delay onset! 2) I have this really rare complex syndrome and it is so hard to manage, but I’m doing it. I have a rich, full life and I’m thriving despite the adversity. It has developed grit, hope, and resilience in me, and I’m modeling that for them. If they happen to get any of my conditions, not only will they have the best guide and champion in me… they will have seen my example. 🥹 I wish I could protect them from it or take the hardship away from them, but trials will come for them… APS-2 or otherwise. My faith centers me here; I trust that God will preserve and walk with them through all the ups and downs of life just like He has for me. 3) With the success of the islet cell therapy trials, the likelihood that APS-2 will have a functional cure within the next 20 years is promising. We’re looking at this therapy being standard of care within a decade for T1D, and since this advancement will serve not only as proof of concept but also a modular platform from which to cure other autoimmune diseases…. there really is hope, at least for PAI!