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Fishing for clarity

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How fascinating...Thank you for posting.

My grandaughter has a rare genetic disease .."GOIN Hormone POLR 4 H ...hypo mylelin (sp) & hypo dentia." There are fewer than a dozen in the world diagnosed. As I understand, she does not regenerate myelin. She is now 6 years old, but was not expected to live beyond a year.  While she went to kindergarden last year and played soccer, this year she displays increasing deterioration.

Could her condition relate to these hypotheses?  Do you think the deterioration of Ldopa process in PD is anywhere close to the process she has....myelin not reproducing? ... Doctors say it is genetic coding between her parents. She exhibits no PD symptoms.


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New normal, I just wanted to mention lion's mane mushroom for your granddaughter.  It is the only substance that has been found that seems to enhance myelin regeneration.  I have no experience with her genetic disease but I take it for my own PD at 3g a day and it has brought back a good bit of my fine motor function that was lost in my left hand.




I hope there are more future studies on it.  It sounds so difficult to have someone you love who is so young dealing with that.


best wishes,




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