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  The Cain Foundation Forum  Discussion Topi...  Personal Storie...  BOR Natalie
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New Post 4/23/2017 6:39 PM
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BOR Natalie  

 I am 23 years old now, from the UK and I was diagnosed with BOR when I was 9 years old. I have all the physical symptoms of BOR, the ear pits; mixed hearing loss, impaired but stable kidney function and cyst in my neck. My mother and auntie are profoundly deaf and have a cyst in their neck but their kidney function is normal, although they have not been diagnosed with BOR. None of us have had operations for the cysts in our neck, but I am considering this. I continue to see my audiologist and have my kidneys checked annually now rather than every three months. I joined this forum to understand more about others experiences, particularly when starting a family. I was told I would have to have a planned pregnancy but I know nothing about what this involves as I do not plan to start any time soon. It would be good to know and understand my condition better. 

New Post 6/1/2017 10:22 AM
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Re: BOR Natalie  

I wonder what the doctors mean by a planned pregnancy. Do they see risks for you, or for baby, or both? I had a baby last year and she did get my BOR. She has the ear pits, some hearing loss, neck cysts and so far kidneys look alright. She was gestationally small and breech but I'm not aware if that has any relation to BOR. 

I would like to know more about our family's branchial cleft cysts. Are they fully open or closed? Me and my daughter have one of each. 

Also, has anyone in your family with the cyst ever experienced any neck stiffness, torticollis or issues with the cyst and the STM muscle (sternocleidomastoid) interracting? 

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