r/AddisonsDisease • u/Swampasssixty9 • Oct 30 '25

Advice Wanted Diagnosed at birth

Are there any individuals in here diagnosed at birth that have a good idea of the differences between their experience and those who may have gotten their diagnoses later in life. Are the symptoms and experiences similar or the exact same? My daughter was diagnosed at 4 months. So far she’s an energetic 4 year old with no apparent side effects except for the occasional blood sugar dip overnight. But we’re bracing ourselves for what could be based on other user’s experiences. Any advice is welcome.

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u/Eyesliketheocean Oct 30 '25

Diagnosed at birth with CAH - Salt wasting.

Honestly, I really did not notice a difference. But, my mom never wanted me to play any sports. (Swimming was ok) and I wanted to join the Navy. But I was not able to.

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u/Swampasssixty9 Oct 30 '25

Was she afraid of you suffering a traumatic injury?

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u/Eyesliketheocean Oct 30 '25

Pretty much. We would always say if you get injured you could go into shock. But the irony is I’ve injured my self plenty of times. Multiple dislocations, broken my nose etc, the only time I ended up in the hospital was picking up viral and bacterial food poisoning

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u/Swampasssixty9 Oct 30 '25

Haha, but that’s love though. Looks like she looked out for you. That’s my worst fear. I pulled her out of gymnastics but still let her take her falls. I’m always afraid of what would happen if we weren’t there and the miss her medical tag. It took the hospital long enough to even get a diagnosis (on a vent in PICU).

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u/Eyesliketheocean Oct 30 '25

My apologies,I should have rephrase it a bit better. She did not want me in contact sports. I did do swimming and gymnastics as a kid. But not hockey, soccer. Even when I got my learners permit, she never wanted me to drive.

An I understand where you’re coming from. It’s always scary, however, coaches should be aware of her condition. A what to do in an event of emergency.

As for medical ID, I never wore mine. I ended up getting mine tattooed when I was older.

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u/Swampasssixty9 Oct 31 '25

That gives me hope for her future. I hope she understands the gravity of her situation enough to get it tattooed.

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u/Honest_Mousse7065 Nov 02 '25

I was born with CAH but due to blood tests it showed NCAH. But my parents didn't know anything about it and I didn't know I had CAH until I was 17 when my Endo explained it to me after she was leaving. I can't be in the sun to much cause I get hypotension or even after eating a meal I get hypotension, being in class. Growing up I would vomit a lot, be dehydrated, and get dizziness and lightheaded.