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My wife and son have ALD. My son had a successful bone marrow transplant in 2019 at the University of Minnesota. I am a member of a 501(c)(3), X out ALD, that supports ALD research.
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I am a female carrier of ALD who unknowingly passed it on to my son. My son is currently asymptomatic and is being monitored by a team of doctors at the University of Minnesota Masonic Children’s Hospital.
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I have ALD and my son was diagnosed with cerebral ALD. He has a successful bone marrow transplant in 2019.
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Our 22 year-old son, Jack, has ALD. He is 13 years post transplant and has some significant challenges, but is happy and doing well. My mother and I also have the gene and have some limited symptoms.
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I’m am a 51 year old female with ALD. I have known about ALD for almost my whole life. My brothers were diagnosed with ALD when they were young. My sister and I were diagnosed as “carriers” about 15 years later. I am currently very symptomatic and have been for the past three years although i started to experience minor symptoms when i was about 38. I currently use a wheelchair the majority of the time and have significant spasms in my legs as well as numbness in my feet, legs and fingers. I am hoping for more research studies to be conducted with female subjects. I am also hoping that knowledge will continue to grow within the medical community with regard to women with ALD.
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I am the founder of Fight ALD - Fighting Illness Through Education. I started my organization in 2004 after losing my eight year old son, Sawyer, to ALD 6 months after his diagnosis. I have been on a mission to educate medical professionals, school nurses and the community about the early onset symptoms, diagnostic test and treatments as well as lobbying for newborn screening. I continue to support the ALD Connect community through my advocacy work.
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...