What can we as a group do collectively?
I have had this condition since age 19. I am 36 now. I wonder if our bodies are reacting to a mild form of stress which triggers our bodies to put out certain types of pheromones when we get out in public. Maybe its a pheromone or hormone problem instead of weak muscles.
Maybe its like a skunk, (sounds funny, I know) which releases its strong scent when it feels threatened. Also, animals release pheromones when trying to attract a mate, and they probably, some anyway, are also able to release a scent that repels others. Just a thought.
I am interested in how many people have went to a doctor and explained this and if any have received any advice, etc.
I think we should forward all the email discussions to some type of specialist at a leading research hospital, to ask for their help, to show them that there is a group of people who have the same condition with similar symptoms and ask for their advice.
Do you all have any idea where we could send these messages to?
Thanks