It’s hard to imagine that in 2015, a person could be at a loss for information.
Especially when Google puts the collected knowledge of mankind at our fingertips.
But for those of us suffering from Meniere’s disease, and other vestibular disorders, having access to information has not always helped. In fact it often works against us.
The conflicting reports, treatment protocols, and overabundance of unhelpful information can quickly overwhelm the toughest of us. And the massive lack of awareness only makes everything more complicated. It is incredibly difficult for the newly diagnosed to get the information they need. For the undiagnosed, it’s nearly impossible.
It’s strange too, because it’s a problem that shouldn’t really exist. Most people have experienced dizziness or vertigo at some point in their lives or, at the very least, know someone who has. In fact, over 79 million people are affected by a vestibular disorder in the United States alone. But despite this, there is little awareness and most people don’t get the help they need.
For those lucky enough to find them, there are resources that stand out above the rest. Organizations that exist to inform and advocate for the people with balance disorders whose voices are not yet acknowledged by the rest of the world.
It’s a good thing too, because there was a time when information was scarce, and people had nowhere to turn.
The Humble Beginnings of the Vestibular Disorders Association (VEDA):
The year was 1983. For those suffering from vertigo or dizziness, the chance of improvement was hit or miss. But everything was about to change.
In Portland, Oregon, at the Good Samaritan Hospital, a new movement was in its infancy. Though the participants likely had no idea of what was to come.
It started when group of vestibular patients at the hospital, and their doctors, decided to form a support group called the “Dizziness and Balance Disorders Association of America” (DBDAA) with three specific goals:
- To collect and distribute information about vestibular disorders
- To educate the public, as well as healthcare professionals, about vestibular disorders and their effects
- To establish and nurture a support network for the people and families affected by vestibular disorders
It was a beautiful idea and helped a significant number of people, but it lacked the ability to raise awareness at a larger scale.
Until one day in 1989, when producers from NBC’s “Today Show” came calling, and the fledgling group finally caught its big break.
You see, the “Today Show” was planning a segment on balance disorders, and was hoping to speak to with experts. They conducted interviews with the DBDAA board members, staff, and several patients throughout the Portland area.
When the segment finally aired, the DBDAA received thousands of requests for more information. People from all around the US finally knew they were not alone and wanted to know more.
The DBDAA finally had a chance to make a real difference. They hired a full time director and changed their name. The Vestibular Disorders Association (VEDA) was officially born.
Over the following decades, VEDA continued to grow and expand into a massive global community. Today, VEDA provides information, support, and advocacy to millions of vestibular patients and healthcare professionals around the world, each and every day.
Balance Awareness Week 2015 (9/14 – 9/21):
VEDA holds a special place in my heart because I was one of those people. In my darkest hours with Meniere’s disease, I was sure my life was over. But I was lucky enough to find VEDA fairly early on and it really made a difference. It was the first time I found any information about Meniere’s disease that didn’t terrify me into inaction. It was the first time I allowed myself to have hope.
I bring this up because several months ago I decided to join VEDA as a Volunteer Ambassador to help others, and give back to the organization that had given so much to me, and millions of others like me.
And this coming Monday marks the beginning of VEDA’s Balance Awareness Week.
What started as an initiative to decrease the time it takes to diagnose vestibular disorders, has evolved into an international movement, with nonprofit and for-profit organizations from around the world joining the cause.
Today, I am officially launching my campaign for the Mind Over Meniere’s community to support Balance Awareness Week and there are several different ways to get involved.
First and foremost, if you can afford it, I encourage you to make a donation.
Many of you know what it’s like to suffer without understanding. In 2015, no one should have to go without a diagnosis for any amount of time, but it happens so often, and it breaks my heart.
Your money will help VEDA continue to expand their reach and prevent the unnecessary suffering of others.
For my own part, I will be campaigning as well as donating 20% of all profits from sales of my new book, Mind Over Meniere’s: How I Conquered Meniere’s Disease and Learned to Thrive, through the end of September.
In addition to donations, here are several other important ways you can help the cause:
- Print and post this year’s Balance Awareness Week poster which has an infographic on the back side to use after Balance Awareness Week.
- Tell your story by creating your own personal Campaign Page and ask your friends, family, co-workers, colleagues, etc. to support you.
- Join me and participate in the first annual Balanceback 5K Dizzy Dash. I have been training for several weeks and am planning to attempt to run/jog the 5k all at once. This is something that was unthinkable for me for a long time.
- Purchase a SUPER COOL Balance Awareness Week T-Shirt – three designs to choose from – all proceeds benefit VEDA.
- Share these Top 10 Facts About Vestibular Disorders.
- Submit our Balance Awareness Week press release to your local media.
- Launch a social media campaign or join VEDA’s by sharing VEDA’s Balance Awareness Week Facebook posts.
The Healing Power of Helping Others:
Holocaust survivor, psychologist, and author, Viktor Frankl, once wrote, “In some ways, suffering ceases to be suffering at the moment it finds meaning.” He wrote this as a reflection of his years spent in concentration camps at the hands of the Nazis. It is one my favorite quotes and boldly illustrates the transformational power of finding meaning in your life.
Helping others can be a powerful force for healing. When you externalize your focus to the suffering around you, you give your pain a reason to exist. You can transcend the pain by making a difference.
If you have the time, I encourage you to get involved with VEDA as a volunteer as well. It’s inspiring and meaningful work.
I know for me, it feels good to work towards something so much bigger than myself.
As a volunteer for VEDA, you can help make a difference, too!
I hope you will join me in my campaign for Balance Awareness Week.
Together our voices will be heard. Together we can make a difference for all our fellow sufferers who are still out there, alone and afraid.
Help me make difference today!