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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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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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Sister of ALD/AMN brothers, mother of AMN son, female symptomatic AMN
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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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We have a 7 year old daughter and a 9 year old son, recently diagnosed with ALD.
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Carrier and caregiver
Bio :
I am near 70 years old and have had AMN symptoms, especially awkward gait and fatigue increasingly over the last 15 years. I've held on to my tennis although it has morphed into Cinderella tennis, "just hoping to get to the ball." Our son's AMN began affecting his walking at...