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Do you have any family history of LEMS?
Periodically I check out the Myasthenia Gravis News page because many of their topics are pertinent to us with LEMS and vice versa.
I found this topic and thought it was interesting, so I wanted to share it with you all.
The topic:
Research and understanding of the genetic components of MG are limited. New findings are revealing that MG has the potential to be passed down through generations of family. How these genes contribute to MG or predispose an individual to risk is still being studied.
So I want to ask our community if you have any family history of LEMS or family members that you believe could have had LEMS.
Currently, they are unsure if LEMS can be passed down through generations, although they have stated that myasthenia can present in a newborn temporarily after the birth. I will discuss that more in-depth next week with you all!
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5 Replies
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My father had another neurological disorder – Charcott Marie Tooth disorder. It was disabling to the point he was confined to a wheelchair. We were estranged so I don’t have much detail of his illness.
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@dpmitnick
Hey! For some reason, I’m just getting the notification on this comment. Sorry for the really late reply!
I’m sorry to hear that you are estranged, I understand that, I have a similar relationship with my dad. I wonder if the two could be connected at all. I think it will be really interesting to see what they find out about genetics in the next 5-10 years.
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My daughter is 14 and showing signs of LEMS. I can’t find any pediatric neurologists who take it seriously tho because she comes up negative on the fractionated antibody tests. I did too – until they finally caught the vgcc antibody once. Thank goodness for a persistent neurologist!
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Hi Heather. My name is Lori Dunham and my daughter was diagnosed with LEMS at 15 (started showing symptoms at 14) so I have an idea of what you are going through. If you would like, we could touch base privately. I’m happy to talk or message. Where do you live?
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@heatherbluephoenixart-com
Hey! I’m sorry you and your daughter are going through this.
@lorildunham may be able to offer some guidance to you regarding your daughter. Her daughter Grace also has LEMS
If you haven’t already, you should check out the weekly column she writes, “Stretcher -Bearers”
in which she talks in detail about life and navigating her daughter’s LEMS.
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