AMN Easier was set up to help men and women who have adrenomyeloneuropathy (AMN) - to help make this disease a bit easier to live with.
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Symptoms? Onset of AMN?
Sandyyy14 days agoPOPULAR
Minoryx launch phase 2/3 for new AMN drug
wilburlois153 days ago
Something else! Not exactly sure what it does because no description in the article (or anywhere else for that matter) but good news nonethe...
monkeybus6 days ago
Had my adrenal glands checked...
12 Replies1 Like
Aaron983 days ago
Has anyone tried this drug to manage urinary urgency or frequency? I have been taking it for three days, and I haven't found it to make much...
monkeybus14 days ago
This was a new one on me. I only Googled it because I liked the name...
11 Replies2 Likes
bioting6 days ago
Does anyone with experience with cerebral amn have any tips or knowledge on how to communicate with someone who's lost their speech and visi...
Another diet article, again, nothing to do with our disease.
monkeybus7 days ago
This is about miracle cancer diets. It mentions the ketogenic diet. Interesting stuff...
Otago exercise any good?
Cherie11 days ago
I have found a local Otago exercise group and was wondering if anyone had tried it
This is absolutely nothing to do with our disease but it is definitely something we should explore. Have a read.
monkeybus10 days ago
I realise some of us are exploring different diets. Paeleo, Wahls, Ketogenic, et al...
2 Replies3 Likes
Viking Therapeutics' VK0214 Receives FDA Orphan Drug Designation for the Treatment of X-Linked Adrenoleukodystrophy
wilburlois15a month ago
This is important, and also current! Not holding my breath but it's a step forward
2 Replies1 Like
Not our disease, but this is what we should be doing.
monkeybusa month ago
I look at plenty of other diseases, always looking at meds...
2 Replies2 Likes
ALD Patient Portal
monmon14 days ago
A lady on the facebook Female Carriers of ALD page, pointed out the ALD Connect Patient Portal. Fairly new, it's been up since April but I h...
1 Reply2 Likes
Spasticity (Triamcinolone Acetonide)
monkeybus13 days ago
Triamcinolone Acetonide is a corticosteroid, it's usually sold as a cream for topical treatment...
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Spasticity (Whole Body Vibration Machine)
monkeybus15 days ago
I used to go to this department store, they had a load of home exercise equipment, including a vibration machine...
Spasticity (Selective Dorsal Rhizotomy)
Was bored last night, Googled "revolutionary spasticity cure...
Women-only: at what age did your symptoms first become noticeable?
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