Another year begins and this summer it will end my twelfth year and start my thirteenth with our little friend, Burning Mouth Syndrome (BMS). That is a long time, but there are others out there who have suffered longer. Sometimes, much longer.
As we round the corner into 2020, what have we learned?
BMS is still a mystery. There are evidently no celebrities in the world who suffer from it (or at least they aren’t publicizing it). Diagnosis is still one of exclusion and takes dedication, discomfort, time, and resources to achieve. Most importantly, there is no cure in sight.
“Chasing the Cure” TV show, to which many of us submitted case studies for help, has been canceled (as of Jan. 1, 2020), and the BMS Support website continues to scour the globe for recent studies, information, or coping strategies to help. Have you checked it out lately? It’s free (subsidized and maintained by folks who have or whose lives are affected by BMS) and it is the only site we know of that is solely dedicated to this particular malady.
Click on the Research & Studies tab to see the latest information and alert the webmaster if you know of a study, abstract or survey that is not there! Your support is appreciated!
Facebook Support Groups keep growing, and you can join one yourself by just typing “burning mouth syndrome support group” into the Facebook search bar. The largest has over a thousand members and they hail from all over the world. You may find a perspective or coping strategy there you hadn’t considered, and if you are looking for fellow sufferers to talk with, they can be useful. Like any social media, you will find the good, the bad, and the ugly there so always do your research and run any medication-related advice past your physician.
Do you know of any physical support groups for Burning Mouth Syndrome? Let the BMS Support website know and it will be posted as a resource for people in that area.
When we share information, we all win.