Telling others about BHD

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 often have to take a few minutes to talk about what the disease is, even to experienced doctors. It can also be helpful to seek genetic counselling if you are concerned to talk about BHD with your family.

We have developed some resources to help you educate your family and doctors:

  • The Introductory Pamphlets are a useful introduction for anyone who’s new to BHD;
  • The Clinical Introduction to BHD is designed for patients to print off and give to their doctors;
  • The Advanced Information Pamphlets are useful to patients or doctors who know the basics of BHD and would like some more in depth information;
  • The Medical Education Kit links to four important papers about the best ways to treat BHD patients, which you can print out and give to your doctors. We have included lay summaries so patients know what each study recommends;
  • The BHD Family Letter can be personalised and sent to your family members, informing them about BHD;
  • This Medicard can be printed and folded up into the size of a credit card so you can put it in your wallet. It briefly describes BHD and there is room for you to add your symptoms and previous treatments.

Others with BHD may have had similar experiences; you may like to share advice or questions on the BHD Syndrome Facebook Group.

Last Updated: May 2021
Review date: May 2024