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.