Hey, my name is Jonathan Long. I was just diagnosed and I’m very interested in learning what this syndrome is all about. It’s really kind of odd. My family has a long history of cancer, and I have a hunch now I know why. Two of my aunts have breast cancer, and claim they have the skin discolorations described by the syndrome. I’ll be going to Bethesda for a medical trial. For those of you who don’t know, you should give them a call. They are paying for airfare and hotel. All you have to pay for is meals. All the study stuff is free. I’m looking forward to the genetic test so I can pass the results to my family and see how many of my aunts and uncles have it… as well if seeing if my daughter inherited it.









Hi Jonathan,
thanks for taking the time to get in touch, I hope you find all the information you need about BHD syndrome on this website.
Please feel free to write back with any new updates – I’m sure a lot of people will find your contributions insightful. All the best.
Jonathan
Which hospital in Bethesda were you going to?
I had my VATs at NNMC in bethesda!