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Is there any natural treatment for Fabry disease?
Natural treatments for Fabry disease: what patients have tried and reported, with an evidence-based, medically reviewed summary.
1) Enzyme Replacement Therapy (ERT). Every other week for 4 to 5 hours you are hooked up to what looks like an IV. And until your next treatment you can eat as you please.
2) Galafold (migalastat 123mg). Pill taken every other day with 2 hours of fasting before and after. This pill is, in my experience, not as good as ERT because it does not add enzymes like ERT does, it simply refolds the existing Alpha-galactosidase enzymes you already have so its effectiveness depends on how many enzymes you can make.
3) Beano. Beano (or the Walmart/Target equivalents) contain the enzyme that a person with Fabry Disease can't make for themselves. I read the nutrition label for carbs and fat and whichever is lower I take 1 pill per gram. If no nutrition label is available I take 1 pill per bite.
Warning: the information provided is anecdotal and has not been evaluated by a doctor. Individual results may vary. Please consult with your physician(s) prior trying any thing mentioned.
2) Galafold (migalastat 123mg). Pill taken every other day with 2 hours of fasting before and after. This pill is, in my experience, not as good as ERT because it does not add enzymes like ERT does, it simply refolds the existing Alpha-galactosidase enzymes you already have so its effectiveness depends on how many enzymes you can make.
3) Beano. Beano (or the Walmart/Target equivalents) contain the enzyme that a person with Fabry Disease can't make for themselves. I read the nutrition label for carbs and fat and whichever is lower I take 1 pill per gram. If no nutrition label is available I take 1 pill per bite.
Warning: the information provided is anecdotal and has not been evaluated by a doctor. Individual results may vary. Please consult with your physician(s) prior trying any thing mentioned.
Posted Jul 1, 2020 by Fabry Father 1100
