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Carrier and caregiver
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We have a 7 year old daughter and a 9 year old son, recently diagnosed with ALD.
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I am 60 years old,live in England, and was diagnosed in 2003 after 4 1/2 years of misdiagnosis. I was the first in my family and have 2 girls one of which is a carrier. I have lots of lower back pain, bladder problems and balance issues. I walk with a rollator and use FES, or use a scooter for longer walks. I also have Addisons which was diagnosed 4 years ago, and osteoporosis diagnosed 8 years ago. I am also dairy,soy and egg intolerant.
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Sister of ALD/AMN brothers, mother of AMN son, female symptomatic AMN
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1992: Born
1993: Diagnosed
1998: Bone Marrow Transplant
1998-2016: Chillin'
2017: Joined ALD Connect
1993: Diagnosed
1998: Bone Marrow Transplant
1998-2016: Chillin'
2017: Joined ALD Connect
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Hi, I am a neurologist at MGH working on therapies for cerebral ALD and other genetic vascular leukodystrophies
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I'm a symptomatic carrier of X-ALD.
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HI I'm an AMN but I've had ALD my whole life. Despite my disability I've accomplish a lot and try to keep my spirits up and encourage others with this disease in coping with it. My ears always open always wanted to encourage my ALD family.
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Post-BMT (29 years) previous ALD patient currently working as a Computer QA Automation Engineer.
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My son was diagnosed through NBS in CT