We need to somehow boost awareness and force the government, not only here in the United States, but all over the world, to sit up and take notice. Technically Meniere’s is not a life-threatening illness and they are not wanting to put money into research. All NIH -National Institutes of Health- has done, according to the packet they sent me a few years back, is sponsor drug testing. I have too many drug allergies and cannot participate in any those and also, cannot use those drugs when they hit the markets. They need to research and study the people with Meniere’s, NOT study drugs to put a bandaid on the symptoms and triggers.
Raising awareness starts with those of us who fight this beast every day and those who care about us. Share your struggles on Facebook and other social media in support groups for Meniere’s. Also, if someone you know posts something about Meniere’s and maybe their struggle with it, share it on your wall as well. Encourage your contacts to share these things. Imagine it like a candle. It takes one spark to light one candle. That candle will light the next. Then both candles light two more and the trend keeps going. If you are courageous enough, share your story with everyone you can.
Raise awareness in the minds of your lawmakers. Several years ago, I went for an appointment with my local rep in The House of Representatives, Jimmy Duncan. A friend accompanied me. He listened with intent as I told him all I had to say. He was even more so when told a local hero of his also has Meniere’s Disease. The more we petition the politicians, the closer we get to having them increase real research to find us a cause and a cure.
A week after my meeting with Mr. Duncan, I had to go to the Wizard to have him reinsert the grommets into my eardrums. I had no make-up on. My hair wasn’t done. I felt miserable. The same friend who took me to see Mr. Duncan went with me for this procedure. I lay there screaming and crying and after as I was catching my breath, I told her we should have done a video of me having the procedure done and send it to our politicians. Then, maybe they would really listen.
Early this week I posted here my introduction to a YouTube video series I started to help educate people regarding Meniere’s, by putting a face on it and showing them my struggles. Technically, Meniere’s Disease is NOT life-threatening. Those who struggle with it know that it is life-altering and certain symptoms can be life-threatening. My voice isn’t loud, but I still have a voice. Raise your voice with mine so we can raise awareness around the world. Let us turn our small voices into one large shouting voice.