Why start a site about BMS?
I started this burning mouth syndrome website because:
- Few people know that BMS even exists.
- People who have it usually don’t know that they aren’t alone and other people are living with it too.
- Healthcare professionals have no clue what to do about it.
- There is little research and what there is out there is scattered about.
- Someone had to do it.
Let’s start with what this site isn’t about.
- Medical advice: I do not give out medical advice. I am not a doctor. I am a licensed registered nurse, but I’m not your nurse. This means I don’t know you or your history. So the content of this website is informational, not advice.
- Scam remedies: I will not give anyone a platform for scams. I will delete all emails or messages that promote them.
- Snake oil: I will not give anyone a platform for snake oil. I will not sell any such products or provide links to them.
- False hope: I am providing information and not false hope. False hope is cruel. I’m not saying don’t have any hope. After all these years, I still hope that either I’ll wake up one day pain-free and this nightmare will be over, or I’ll find a treatment. But I won’t give false hope.
So what is this site about then?
As long as I have the bandwidth to do so, this site will be:
- A collection of research, a list of references I use for the site’s content, and other research I found interesting.
- A collection of websites with verifiable and accurate information on BMS.
- Stories from people who live with BMS (to come).
- (Hopefully) interviews with healthcare professionals and researchers who are interested in helping people with BMS.
- And more
I developed this website as a personal project, with the hopes that people will find trusted information. I write it from a personal point of view, so you will find comments and some of my own experiences sprinkled through the pages. This site is not a professional site. The information should not be used as medical advice. It is a way for me to share the information that I have gathered in one place, much as you might do in a conversation. I share the information here to keep you having to look elsewhere if you’d rather not.
I do not claim to be a burning mouth syndrome expert, about its diagnosis, and its treatment. I’m not. I am someone who has lived with it for well over a decade. In my writing, when I do make a claim with statistics or fact, this is information I’ve found through reliable online or print sources and I link to them. You can find my reference page here. When I say “reliable,” I mean academic sources, research papers, as well as organizations that I know to be as accurate as possible with their reporting.
When looking at studies and papers, I look for the most recent ones possible. Unless there are data that haven’t changed over several years, I won’t use anything from more than a few years ago, but there are exceptions.
What this site is not about
I will not write about supposed cures that seem to be just a way to make people spend money on products that don’t work. I will not support them and any emails to me asking to promote such products are deleted without response. If a product does seem to have some success, I may add it to my list of possible treatments, but I do not subscribe to the idea that certain types of therapies cure all. I’ve seen claim that too often in some support groups. People will post things like, “Try ABC herbal remedy, it cures all medical conditions.” What I do believe is that there are some treatments or therapies that can help some people with burning mouth syndrome, but there is no one quick fix. There is no instant cure for burning mouth syndrome and I don’t want to get anyone’s hope up.
I’m not against alternative therapies – I’ve tried many myself – but I won’t pass on misleading and even potentially harmful information.
My goal
My goal for this website is that grows and becomes known as the go-to place for people who want to learn about burning mouth syndrome. I want it to gain attention from people who can make a difference. I want journalists to notice it and interview me or others about BMS so others can learn about it. Most of all, I want others with BMS to know that they aren’t alone and someone is trying to help.