Author Topic: Is anyone a IIH sufferer and have a sibling with the same condition!  (Read 9344 times)

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Offline pinkfrog003

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Hi

I was just wondering if anyone on here who has IIH and a sibling who has been diagnosed too with IIH or is showing similar symptoms to IIH.

I am 27 and have being diagnosed with IIH since 2007. My sibling (32) has now been suffering severe headaches, vomiting and aversion to bright lights - (she is describing me when I was 1st diagnosed! Although I had severe papilledema and tinnitus, as well as others sypmtoms).

Jen  :star
I will be headache free one day.........

Offline Emysmum

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Re: Is anyone a IIH sufferer and have a sibling with the same condition!
« Reply #1 on: July 03, 2013, 10:51:09 AM »
Hi Jen,

Yes!

Both my girls have IIH. The elder is currently in remission but had treatment for 5 years. The younger was diagnosed in February, having suffered headaches for at least a year. They are 10 and 8.

Several families are known to IIH UK with 2 or more siblings having a diagnosis of IIH.

See the following posts for news about possible causes of IIH and progress to date.
http://www.iihsupport.org/index.php?topic=13667.0, http://www.iihsupport.org/index.php?topic=14136.0, http://www.iihsupport.org/index.php?topic=14142.0

IIH UK would love to hear from both of you and would appreciate it if you would complete a patient survey as this will help with future research. Please follow this link to find out more about the survey:http://www.iihsupport.org/index.php?topic=13137.0

Has your sister been diagnosed yet? Please urge her to see both an optician and a doctor if she hasn't done so already. It's worth remembering that it is also perfectly possible to have IIH without papilloedema. My younger daughter has no pap which probably contributed to her diagnosis taking so long.

 :hug Ruth
Posts by members, moderators and admins are not considered medical advice and no guarantee is made against accuracy. Please see your doctor before taking advice found on the internet.

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Offline pinkfrog003

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Re: Is anyone a IIH sufferer and have a sibling with the same condition!
« Reply #2 on: August 19, 2013, 11:17:47 AM »
Hi Ruth

I have followed the link and have now send to emails stating that I'd take part in the survey (lastest email today) but not heard anything.

My sister has been diagnosised now with IIH and is now starting on her meds. So fingers crossed it helps her.

Jen  :star
I will be headache free one day.........

Offline Emysmum

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Re: Is anyone a IIH sufferer and have a sibling with the same condition!
« Reply #3 on: September 01, 2013, 08:33:02 PM »
The survey may take a while to get to you at the moment as all the 'staff' at IIHUK are volunteers who either have IIH themselves or care for someone who has IIH. Currently some are on holiday and several are unwell/recovering from surgery.

I hope the meds work for your sister.

 :hug Ruth
Posts by members, moderators and admins are not considered medical advice and no guarantee is made against accuracy. Please see your doctor before taking advice found on the internet.

http://www.justgiving.com/Hannah-Clarkson-Webb



Offline Kerrie

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Re: Is anyone a IIH sufferer and have a sibling with the same condition!
« Reply #4 on: January 23, 2014, 10:21:16 PM »
Hi,

I know your post was a while ago, but wanted to reply.

Both my mum and I have IIH and Pap. We were both diagnosed around the same age and we both had children of the same age. My mum was diagnosed 20years ago and I am sad to say that medically nothing has really moved forward.

Kerrie xx

Offline Mitz17

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Hi

I know that it is sometime since the initial post. I have 2 children with IIH they were both diagnosed at about the age of 13 years. My son is in remission but my daughter has fully active IIH. It has had an impact on her school and social life. She has been on numerous different medications none of which seem to touch her headache which is constant. I have a younger son hopefully he will not be affected.

Mitz