Should daughters be tested....

Hello! 8 months ago my son was diagnosed with ALD. The disease progressed rapidly and now my son has all ALD symptoms. I have carried out genetic tests and, yes, I'm carier with AMN symptoms ...

I have 2 daughters 10 and 15 years old. In my country genetics said that they will be tested only when they reach the age of 18.

However, I am concerned about my 15-year-old daughter - the last half a year, she has rapidly decreased weight, low appetite and nausea after eating.

Could it be symptoms related to ALD ....?

We tested the cortisol, it was a slightly elevated ... What else should we do?

4 Replies

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  • Hi Zane, yes, your daughters should be tested. A carrier mother can pass to her sons and daughters. A father with the gene will always pass to her daughters, but will never pass to his sons.

    I would say it is very unlikely that your daughters problems at the moment is ALD. Any symptoms in the females usually start much later in life. They may not have the gene at all. I wish you well x

  • Thank you Kazzy!!! :)

  • Yes your daughters should be tested. I live in UK and mine were tested at 14 and 16 as soon as I found out that I was a carrier. The geneticist said straight away that they should be tested. If you are able to join some of the AMN communities on Facebook you will find that there are some women who have started to have symptoms in their 20's although not many. I think your daughter needs further investigation. Have they checked her thyroid? I hope you find an answer soon.

  • Hi, I think your daughters should be tested. I am also an ALD Carrier. My mother has a mutation in ABCD1 gene and passed it both to me and my brother. I have a daughter and she may be affected too but anyway don't worry. the AMN syptoms occur in women lately. My grandmother passed away at age 78 but her legs and movement became very weak at age 74 so you don't have to be worried too much.

    How is your son now? God bless him. Wish you the best.

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