AMN EASIER
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8month old ALD

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.

Sincerely,

A concerned mother

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I take it he has been genetically diagnosed?

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Yes. He has.

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I see do you know there is a support group for ALD carrier mums and one for Adrenal Insufficiency. R U interest

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I will definitely look for those! Thank you

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Thank you COwithAMN and AussieBob, I have replied introducing myself :-)

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Hi, I have 2 sons with Addisons (& ALD) - although fine now due to Bone Marrow transplants. Taking hyrocortisone has not been an issue. They have been taking it for the last 10 years and have had no side affects and live their lives normally. They do however need to ensure they are protected with sun screen on hot days and we (they) can increase their dosage if they feel off-colour.

They both played rugby during their school years and do carry an epipen in case of acute injury (broken bone etc).

I this helps.

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This is amazing to hear. Overall they are happy boys?

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Very happy. Doing well at University and living a normal life. Taking hydrocortison & fludrocortisone 3 times a day is no big deal for them - it just becomes routine.

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Thank you for sharing.

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Hi Rosita5, I am the Support Services Manager from the charity ALD Life, I can help with any questions you may have and we also have some really good written information. Please email me karen@aldlife.org and I will help as much as I ca.

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Female Carriers of ALD ; Support for ALD; Adrenal Insufficiency Support; ALD Support are a few to join

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