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 Genetics?

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painoh
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PostSubject: Genetics?   Mon Jul 19, 2010 9:38 pm

I was just wondering if anybody has had someone else in their family diagnosed with IIH as well?

I found out recently that my second cousin now has a shunt in place to manage her IIH, after her original doctors had mistaken it for an actual brain tumor several years ago.

Now, it seems as though my mother is on the path to being diagnosed too. That is, once she can find someone in her Ruralville, USA town who knows anything about IIH. She's had miserable headaches, vision issues, etc. for years, and after a bunch of misdiagnoses, we're pretty convinced that she might have IIH as well.

It certainly makes me start to wonder about whether there is some hereditary link to the disorder!
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Heidi
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PostSubject: Re: Genetics?   Mon Jul 19, 2010 10:16 pm

Hi there, although it hasn't been proved for definite, there are cases where there are other family members with IIH as well. I have 2 family members who suffer with really bad headaches, but have been diagnosed with various types of migraine. Who knows how far back in a family IIH could have been passed from. I've always thought it had to be a genetic thing, because it's a rare condition and comes from out of nowhere.

I'm hoping that the IH Research Foundation during their research will be able to enlighten us more as to whether or not it is genetic and can be passed along the generations.

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emmylou
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PostSubject: Re: Genetics?   Sat Jul 31, 2010 10:43 pm

hi both me and my cousin both have iih and and under the same hospital however at present have not been told genetics plays a part. both our mums are blood sisters visual problems also runs in our families also our other cousin is under investigations ? for iih so our family are not convinced by what the dr's say.
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ChrisC
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PostSubject: Re: Genetics?   Mon Apr 04, 2011 3:32 am

I have had IIH for 25 years and now my daughter age 20 is also been diagnosed with IIH. Our doctor says that genetics is suspected and being reaearced at this time - but has not yet been proven. But they very much suspect that there is a genetic role to this. Hopefully in time research can prove or disprove as would be very helpful knowledge to our families.
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