Rare Disease Day was established to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
Help me spread awareness about mastocytosis so maybe one day there will be a cure for it! Go ahead and share this little blog post, pin it, share it on facebook, do whatever you can to help spread the word!
Often times when we visit with doctors (especially those outside our usual visits) we are more knowledgeable about Titan's disease than they are. It's very nerve racking to think they don't know what to do to help you! Often times I have to go in prepared and have a plan I'd like to try since they don't have a clue about triggers and what they do to his body. I'm finding with this disease you always have to be prepared!
Rare Disease Day is February 28th so let's get this thing rolling and get people to notice Mastocytosis so maybe one day we can find a cure!