Following the first post reviewing the scientific content of the Third BHD Symposium, here highlights focus on the Patient and Family sessions.
Mornings were for joining the researchers and hearing the latest clinical investigations. Patients were pleased to have the chance to attend these talks and found them interesting: “I liked that I heard about things related to my condition that aren’t part of the published record or that my doctor wouldn’t necessarily know”.
During the afternoons, patients and families came together for small discussions. These groups were led by a genetic counsellor from the USA’s National Institutes of Health who has many years’ experience with BHD. Here attendees learned about the current understanding of BHD syndrome, including updated risks of specific symptoms and recommended care guidelines.
Discussion was lively, as patients related stories of treatments, shared how family members have reacted to a BHD diagnosis and asked questions about the latest research presented that morning. As one attendee reflected, “The patient discussion session was great…[we] know that we will keep in touch as we all learn more…since most doctors do not understand the condition or have even heard of it, we were empowered to take charge of our health and learn how to educate our doctors”.
From both scientific and family sessions, it became clear that there is less clinical discussion about the lungs. While over the past few years, more and more dermatologists and urologists have become aware of BHD syndrome and are now engaged in constructive dialogue about best care, pulmonologists were the least represented at the Symposium. Families with lung symptoms as their main concern remarked how unfamiliar their doctors were with BHD syndrome. As a result, therefore, lung care is now prominently on the agenda.
Overall, patients and family members found the Symposium to be “a very useful experience”, “encouraging”, and “very valuable”. So as not to miss the next meeting, plan ahead now: the Fourth BHD Symposium will be on the North American continent, probably during April 2012.
Finally, a few new patient resources will be available soon; do keep checking the website for updates!
www.bhdsyndrome.org – the primary online resource for anyone interested in BHD Syndrome.
