Women who were starved by the Nazis in Holland gave birth to smaller offspring, no surprise there, but these children went on to have small offspring , and on and on.
Myself and my brother have the same ABCD1 mutation , yet he is older and in much better condition than me.
But, my mother quit cigarettes when pregnant with him, yet she smoked heavily with me. Then again , I was a militant vegetarian most of my adult life , he wasnt.
Small sample size, but there is much more to this than a genetic mutation.
I definitely agree that there's much more to it. When I was on a vegan diet, I found that I actually got a lot worse. Now I'm following a Paleo diet which does not have any grain carbohydrates. Grains cause inflammation in the body and in many of diseases like ours inflammation is the big concern. I would highly recommend making a switch.
I'd think the problem you have doing something similar with AMN is the lack of specialists in this condition. I'd imagine many countries would be very under-represented.
Indeed, most people with AMN likely don't even know they have it. If I hadn't got lucky with a free genetic test, I'd still believe I had HSP. I'd probably be happier as well.
Not that I'm particularly sad, but HSP is a slow grind, with fewer complications all around.
I was initially tentatively diagnosed with HSP until I had the VLCFA test. The outlook is probably better but HSP does feel a little like the "other" category where all people with peripheral neuropathy are placed unless there are good reasons to put them somewhere else (AMN, MS, etc). As a result, there is upside and downside: AMN is most likely worse but it is also a specific metabolic condition that has a known cause, which will probably [within or beyond my lifetime] see an effective cure or treatment. HSP probably not. As a person, HSP is probably easier to deal with. As someone with a scientific background, HSP diagnosis feels unsatisfactory.
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