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My four year old son has CALD and is currently about 80 Days post transplant.
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Hi. Father of two ALD boys
Bio :
Symptomatic mom of 2 boys with ALD (a toddler and a grown son) and an adult child without it. A former paramedic, I work at home now to make sure the youngest has all of the modern medical, educational, and psychosocial opportunities available to him. When not playing and teaching...
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Mother of 2 sons with ALD and symptoms female. I thought I had an account already, but neither of my email addresses are being recognized
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I am a mother of a NBS baby from North Carolina. To my knowledge, NC is currently not testing, but we were fortunate to be picked up during their pilot study in 2018. My goal is to advocate for my son through self education and monitoring, and to also contribute to the effort of supporting newly diagnosed families.
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My eldest son died 2017 at age 26years,he had cerebral ALD.
My youngest son is 23 years old and tested positive but is asymptomatic.
My youngest son is 23 years old and tested positive but is asymptomatic.
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I am retired
I have ALD and lost 7 members of my family
I have ALD and lost 7 members of my family
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symptomatic woman-- ald carrier
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I have a 13 yr. old boy who has gone through a successful BMT and a daughter, 12 who is a confirmed carrier. I present with symptoms. Some neuropathy, bladder and bowel issues, leg cramps, nerve pain and fatigue. I would love to get newborn screening passed in Idaho.
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I am a 56 year old female living in Texas with X-ALD/AMN. My mother, two brothers & sister have/had the ABCD1 mutation. I have been symptomatic for 12 years. I was diagnosed at the UDN at Baylor in Houston, Texas.
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My boys were diagnosed in 1992 after our 1st son started having lots of problems, regressing basically. We were sent to U of M and then to Dr Moser. Kevin passed away in 1993. Our 2nd son started having problems in his late 20's. He was in the Lorenzo's oil study back in the 90's.