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I'm a family member of an ALD patient
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I am a grandmother of a sweet baby boy who is 3 months old and was diagnosed with XALD at birth.
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I’m a 28 year old nurse living in Chicago. My dad has AMN, my uncle passed from it, and my aunt is a carrier. I’m married and starting to look at family planning and I’m getting genetic testing this week. Unfortunately, my dad’s condition is worsening quite rapidly, too. Along with all of this, I have had to face the fact that I have to deal with this condition as well (and I already have some mild symptoms). I would love to get to know other women with this condition and be involved in research as well.
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Newly diagnosed. Trying to learn it all.
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I am a new born screening mom.