We have started publishing accounts of the difficulties involved in obtaining a diagnosis and also individual experiences of the condition. It is a lot easier these days than it was in years gone by as more doctors are becoming aware of BEB.
If you would like to let us know of your own experiences, it would be very helpful to others who are in the same situation. You would not be identified. If you are not already registered for this site, please register and send your story via the Webmaster link on the Contact Us page.