Once you have been diagnosed with BHD, you may have concerns about explaining your diagnosis to others. Since BHD syndrome is a rare condition, you will very often have to take a few minutes to talk about what the disease is, even to experienced doctors.
The Information Pamphlets are useful introductions to inform others about BHD syndrome.
It can also be helpful to seek Genetic Counselling if you are concerned to talk about BHD with your family.
Others with BHD may have had similar experiences; you may like to share advice or questions on our Forum.