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Hi, I'm new
He also mentioned that if it is not MS, maybe it is a
leukodystrophy
like ALD or a hereditary spastic paraplegia. The lumbar puncture was normal, of course. My dad was a real hero at this point. He caught wind that ALD is on the table and asked the MS neurologist if he would order a VLCFA lab.
He also mentioned that if it is not MS, maybe it is a
leukodystrophy
like ALD or a hereditary spastic paraplegia. The lumbar puncture was normal, of course. My dad was a real hero at this point. He caught wind that ALD is on the table and asked the MS neurologist if he would order a VLCFA lab.
tetris
in
AMN EASIER
6 years ago
8month old ALD
We are keep a close eye on him, I read constantly about
leukodystrophy
and Addison’s. Today I noticed his tongue seems to have a black pigmentation, I wonder if this is the first sign of what’s to come. He’s recovering from a cold but overall seems normal.
We are keep a close eye on him, I read constantly about
leukodystrophy
and Addison’s. Today I noticed his tongue seems to have a black pigmentation, I wonder if this is the first sign of what’s to come. He’s recovering from a cold but overall seems normal.
Rosita5
in
AMN EASIER
6 years ago
Disease Maps
https://www.diseasemaps.org/
leukodystrophy
/adrenomyeloneuropathy/map/ What say, folks? Shall we all register and plot ourselves around the world?
https://www.diseasemaps.org/
leukodystrophy
/adrenomyeloneuropathy/map/ What say, folks? Shall we all register and plot ourselves around the world?
monkeybus
in
AMN EASIER
7 years ago
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Support Medical Research and Spread Awareness with a T-Shirt
I received an email from the United
Leukodystrophy
Foundation (ULF) where all proceeds would benefit ULF research. This a great way to wear this shirt and help raise awareness of
leukodystrophy
. Hurry as it's only available for 19 more days. Orders will start shipping February 20th.
I received an email from the United
Leukodystrophy
Foundation (ULF) where all proceeds would benefit ULF research. This a great way to wear this shirt and help raise awareness of
leukodystrophy
. Hurry as it's only available for 19 more days. Orders will start shipping February 20th.
SongStream
in
AMN EASIER
7 years ago
AMN and Leukodystrophy
My metabolic specialist just told me I have AMN and I don't have
Leukodystrophy
. I thought AMN was a type (or subsection) of
Leukodystrophy
. Does anyone know what the difference is between them? Thanks for all your help and interesting discussions. Nan
My metabolic specialist just told me I have AMN and I don't have
Leukodystrophy
. I thought AMN was a type (or subsection) of
Leukodystrophy
. Does anyone know what the difference is between them? Thanks for all your help and interesting discussions. Nan
nan17
in
AMN EASIER
7 years ago
Kennedy Krieger Leukodystrophy Clinic
On their
leukodystrophy
clinic days, you are able to see specialists in neurology, endocrinology, physical therapy, rehabilitation, social work, and urology. I am very interested in hearing the thoughts of those who have been out there. What part of the visit was most beneficial for you?
On their
leukodystrophy
clinic days, you are able to see specialists in neurology, endocrinology, physical therapy, rehabilitation, social work, and urology. I am very interested in hearing the thoughts of those who have been out there. What part of the visit was most beneficial for you?
Aaron98
in
AMN EASIER
7 years ago
New Drug
From the United
Leukodystrophy
Foundation. https://news.northwestern.edu/stories/2017/may/spherical-nucleic-acid-drug-human-brain-cancer-glioblastoma/ Developed for cancer, but promises to treat neurological disease-a-plenty.
From the United
Leukodystrophy
Foundation. https://news.northwestern.edu/stories/2017/may/spherical-nucleic-acid-drug-human-brain-cancer-glioblastoma/ Developed for cancer, but promises to treat neurological disease-a-plenty.
monkeybus
in
AMN EASIER
7 years ago
Last chance to Clark Brothers documentary!
Last year, a documentary was aired on two brothers who were regressing into a child-like state because they were carrying a rare type of
leukodystrophy
. The Curious Case of the Clark Brothers was broadcast on Channel four in November.
Last year, a documentary was aired on two brothers who were regressing into a child-like state because they were carrying a rare type of
leukodystrophy
. The Curious Case of the Clark Brothers was broadcast on Channel four in November.
Hidden
Partner
in
Leukodystrophy Support
12 years ago
Channel 4 - The Curious Case of the Clark Brothers
These brothers got
Leukodystrophy
in adulthood, and I first saw their story in the Lincolnshire Echo on May 2 2012 (I used to live in Lincoln) soon after I got my diagnosis of AMN. We all know the links of AMN to ALD, and I wanted to see the programme for that reason, but found out too late.
These brothers got
Leukodystrophy
in adulthood, and I first saw their story in the Lincolnshire Echo on May 2 2012 (I used to live in Lincoln) soon after I got my diagnosis of AMN. We all know the links of AMN to ALD, and I wanted to see the programme for that reason, but found out too late.
help2hand
in
AMN EASIER
12 years ago
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