My father had the MLD gene, me, my son, and my grandaughter now has full blown MLD and undergone transplant (www.emmsfoundation.org).

Emma with MLD's arylsulfatase a is about 11. Mine is 9. Does anyone know of any direct or side effects that low level causes when only one gene is present? (like my father or me?)

My father, begining at age 65. began having intermittent severe leg cramps and then later lower arms and hands. Not just cramps, his muscles looked like snakes twisted over on themselves in tetany. Now I'm starting.

My older brother had the same syndrome....anyone have any knowledge of any correlation...or any other information of a very low arylsulfatase a level? Really appreciate it.

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