My son was diagnosed at 1 month with ALD. His cortisol levels were checked and his HCT keeps going a little higher than the ACT (I hope I am stating this correctly) and his first MRI came back normal. We are keep a close eye on him, I read constantly about leukodystrophy and Addison’s. Today I noticed his tongue seems to have a black pigmentation, I wonder if this is the first sign of what’s to come. He’s recovering from a cold but overall seems normal. I worry about about how his quality of life will be, I am hopeful because we caught it early that we will be able to help him through the hurdles.
I am slightly venting but also, I want to know what’s it’s like living with Addison’s. The day to day? Is it difficult to take supplemental hydrocortisone? Does th disease make you prone to depression? Were you surrounded by a good support group/family? What’s life like without supplements? Thank you for your time.
A concerned mother