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H63D Gene Mutation & Severe Iron in my brain

Blood Cancers & Disorders | Last Active: Jan 2, 2020 | Replies (5)
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@butterflylan17

Hi Sunnyside17,

Thank u SO much for your response! I will definitely check out that website! May I ask if your husband and daughter tested pose for the PANK gene mutation and/or other gene mutations?

I have not done any phlebotomy or even chelation meds. I just want to get ahead of this if I can. It's my short term memory that is just awful. There could be some devastating issue with a family member and i will completely forget about it, unless i keep reminding myself. I've gotten tired of hearing my mom say "honey, I told you about that." I feel so stupid!

Best wishes to u and your family!

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Replies to "Hi Sunnyside17, Thank u SO much for your response! I will definitely check out that website!..."
sunnyside17 | @sunnyside17 | Jul 31, 2019

They have only been tested for the two main gene mutations for hemochromatosis, not the PANK gene. Did you test positive for that? I see iron accumulating in the brain is a symptom.My daughter is suspected to have familial hypobetalipoproteinemia a genetic condition that causes very low cholesterol. She’ll get tested in a few months. I’m sorry I would’ve left link to website but don’t know how to do that here. You should be able to find it easily. I’m sorry you’ve suffered so but there is hope as phlebotomy will help to draw the iron out of your brain as your body uses those iron stores to make new blood(I think) My best to you! Hope to see you on the iron email chain soon.

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