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Addison's Disease Message Board

Addison's Disease Board Index

Bless your heart. I know what you are going through. My daughter was diagnosed at age 12. I was so scared and no one knows what the disease is let alone what she is going through. The good news is that she is 14 now and she has done remarkably well. I thought she was going to be sick with every illness going around due to lowered immunity because of the cortisol, but she has been very well.
Here are some things that we have discovered:
She probably really is tired when she says she is.
She has a low tolerance for heat-take gatorade with you when you will be out in the heat.
Make sure her teachers, PE coach, and administrators know about this and what they should watch for in an emergency. Most will have not heard about Addison's.
Get her doctor to write a note to her PE teacher for her to be able to bring gatorade during PE if needed.
If she takes a middle of the day dose, have her take it at school (with proper paperwork from her doctor) instead of waiting until she gets home-we have discovered that taking her afternoon cortisol earlier is better than later.
Keep an extra calendar to write down unusual or different symptoms. Or to keep up with levels of tiredness. Something that does not seem to be related to her Addison's may be. Take this to the doctor every time you go.
Keep your endocrinologist's number in your cell phone-you will talk to him/her a lot. Don't hesitate to call.
Read as much as you can on Addison's-The terms sounded Greek to me when we started.

My daughter lives a normal teenage life-she really is fine. We just have to make sure she has her meds. If you have any other questions, let me know-I would love to hear from you to see how you are doing!

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