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Any in Houston??

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My name is Delia Candelaria and I'm looking for children in Houston with cavernous angioma. My son Julien Bruce has angiomas in he's brain and spine, I'm doing a Fun Run to bring awareness of this illness. Julien was diagnosed in 2008, but has been dealing with this illness since 2004. He is now 12 years old and is not handling he's illness well at times. I'm looking for support with children around his age that he can relate to about this illness.

Thanks,
Delia
Hi Delia,

My name is Shannah, and I'm from Houston. I'm not a kid (27 now) but I was diagnosed with cavernous angiomas when I was 18, just nine days after my birthday. The doctors said it was my second bleed; they'd found another old spot on my brain. I can't say for certain, but I think I was 14 when I started having symptoms. I remember I had a migraine so bad one time that till this day my family still remembers it.

Anyway, after the doctor's diagnosed me with having cavernous angiomas they released me from the hospital without much information about what cavernous angiomas are exactly. To this day I don't really understand much about it or know how big my angiomas are and exactly where they're located. I had an MRI two years ago and they told me I have 8 angiomas that are small, stable and clustered around each other. From what I've read other people have far worse symptoms than me. Mine mainly seem to consist of head aches. I have them on an almost daily basis. Sometimes they're like a dull ache and other times it's like an earthquake happening inside my head.

I have never met any one who had cavernous angiomas or even knew about them. This is the first personal encounter I've come across.

Thanks,

Shannah

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