Julie Cook, a freelance journalist for magazines such as Bella and Women’s Own, is interested in doing an article on a family affected by a rare disease in order to help raise awareness.
A copy of the article will be sent to interviewee(s) before going to print to ensure that they are happy with it. Interviewees would be paid a fee if their article was printed.
If you are interested in taking part, please contact Julie at jules_77123(at)hotmail(dot)com with a brief overview of your experience and a contact telephone number. If she thinks that you may be useful for the article, she will be in touch to arrange a telephone interview at your convenience.
My cousins and I have a positive diagnosis for BHDS. I would agree to be interviewed as I believe they would also.
My mother (85 yrs), myself (57 yrs), and my brother (45 yrs), have BHD. I have 2 additional brothers who show no signs of having the syndrome, but have not been tested. I have the facial skin bumps, kidney tumors, and have had my right lung collapse twice. I would welcome the chance to make this syndrome more known, in the hopes of having people learn of it before the kidney tumors have had the chance to grow past the size of being manageable.
I am happy to be interviewed. The more information and publicity that is disseminated increases the chance of more families becoming aware and being tested.
I have facial skin bumps, 3 colapsed lungs and a host of other issues going on. I would be happy to be interviewed
I have been diagnosed with BHDS and was glad to finally have a diagnosis after many, many years and visits with dermatologists and laser treatments. I would be happy to be interviewed.
I was diagnosed with BHD in October 2010 after a year and a half of test after test, doctor after doctor, in & out of the hospital and a lung resection. Happy to have a diagnosis, but wish there was more information available.
I had 5 spontaneous pneumothorax with my left lung resulting in me having a thoracotomy. I had two tumors one on each kidney. In February 2010 I was diagnosed with hypertrophic obstructive cardiomyopathy resulting in me having surgery to correct my weakened heart.
Just this week, I have had over 200 mini skin tumors burned off my forehead and have many more on my face and nose to be burned off in a couple of weeks.
I’m very interested in participating in an interview and see if all my health issues are related to BHDS.