Hi my name is Karen. I am 48 years old and live in New Zealand.
I had several collapsed lungs three years ago, and because other family members had also had collapses I participated in a research study in America and discovered BHD. My mother and her 6 siblings have all had DNA tests done and have all had positive results for BHD. This concerns me a bit, I know there is meant to be a 50% chance of passing on the mutation, but our odds are a lot worse than that! I have two children and have been hoping that at least 1 of them would not have it, now I don’t feel so confident. Has anyone else had this high an incidence of the syndrome?
All of us that have been diagnosed are now having regular kidney scans, my cousins will now all be tested.
It is good to have this site to find other people with similar experiences, BHD is a weird combination of conditions, and so unpredictable as to which symptoms, if any, may present. I’m also looking forward to improving my knowledge of the syndrome.
Cheers
Karen
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