Raise Awareness on Meniere's Disease!

I addressed this matter on my other blog a while back, but what better place to do that again than on this blog!

I think everyone with Meniere's disease can agree that there isn't enough information out there and way little research is being done. So many people have Meniere's disease, and yet nobody talks about it. Why is that? Why isn't Meniere's disease considered important enough to make it more known? Our curse is that this disease is invisible. Maybe if we were all walking around with our heads bandaged up, people would take it more seriously.

There is a petition online started by Judy McNamara Tripp to get Bono and U2 help us raise awareness. The petition states the following:

We are requesting that you would consider one of two possible options: First, creation of a simple (filmed) statement before you sing your song, “Vertigo” during one of your concerts, mentioning the need for a cure, something along the lines of: “We need to find a cure for the millions who suffer lives filled with vertigo and deafness caused by Meniere’s disease” or a similar statement. Or, if more acceptable, for you to create a public service video for 'YouTube', that addresses Meniere’s disease, helping us to spread awareness for this complex disease by raising interest and empathy and hopefully increasing the 'desperately needed' research dollars that will provide better treatments and ultimately a cure.

You can find the petition HERE. Signing it only takes a minute, and we are so close to 10,000! Please make sure to share this with your family and friends. Thank you!

Comments

What I Want You to Know About Me and My Life with Meniere's Disease

If you know someone with Meniere's disease, you should read this. If you know me, and are a part of my life, then you should definitely read this. 1. It's completely fine to ask me about anything related to my condition! I would rather have you ask than make assumptions. MD is not a sensitive subject to me, and I'm happy to fill in the gaps! 2. My condition is permanent. My hearing loss is permanent. Please don't ask me a year from now if my ear is all better - it won't be. There's no cure for MD, and this is something I'm stuck with until there is one. 3. If/when I say I can't hear you, I mean it. Please accommodate to that, and speak up, or write or type what you need to say to me. Or, if you know Finnish or American sign language, you can sign to me ;) 4. When I have vertigo, please know that it's quite debilitating. If I ask you to drive, it literally means my world is spinning out of control and you do not want me operating heavy mach...

How Others React To My Meniere's Disease

I had never heard of Meniere's disease before I found out I have it, so it wasn't really realistic for me to expect others to know what was going on with me. When I started telling people I have MD, the most common replies were: "Okayyy..?" "What's that?" "Neverheard" "A what disease?" "Ooh, what a cool name!" Yep. My chronic illness does have a cool name, I do agree. It's sad how Meniere's is so little known. My friends were interested in learning about it, but since my disease is pretty well under control and it doesn't have a direct affect on anyone besides myself, they tend to forget about it. They'll ask things like: "What was the name of that condition you have, again?" "You had some ear thing, right?" "Are your ears all better now?" I don't take it personally if someone I know forgets the name of my disease or if someone remembers the name but doesn...

Hearing Aid Update

I have been living with a hearing aid for about a month and a half now, so I thought I'd give you guys a little update on how everything is going. It's going pretty damn well! When I first got my hearing aid the ear piece was a very general one - one that could fit into anyone's ear. It worked fine, but it was itchy from time to time. At first I didn't notice too big of a difference with or without the hearing aid on, only some certain noises and stuff. It took a few weeks for my brain to adapt enough for me to be able to notice how my hearing drops when I take the hearing aid out. I also noticed how it helps with my tinnitus :) Almost a couple of weeks ago I got my own individual ear piece, and was introduced to whole new sounds! I didn't know there could be that big of a difference between the general ear piece and the individual one! I hear so much better now. The ear piece fits my ear perfectly (as it should, of course), and doesn't itch. Plus it...

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