FYI: NIH has a great research for BHD and prevalence of renal cancer. They do a great work-up, send results to your PCM. Research results are not readily available to insurance companies. they are protected by law. Look under clinicaltrials.gov and type in BHD on search line. Dr. Linehanm is heading up the research and he will be giving the lecture at 4th BHD Symposium in Cincinnati.
Does anyone else with BHD, also have Ehlers-Danlos, mastocytosis, or Dysautonomia complicating their situation??? I'm looking for good advise to better manage these; doctors are not real great at managing any of these problems unless you get lucky and just find one. NIH told me there were really only 2 great physicians in the entire world that can advise us on good wholistic medical care. Hope to learn more at the symposium.