Meniere's Disease: Raise Awareness

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Bono we really need your help…..

We are speaking on behalf of the millions of people, worldwide, who suffer lifetime's filled with constant ‘vertigo’ from a little known and very misunderstood disease, known as Meniere's disease. 

Meniere’s disease steals lives, leaving it's victims unable to function as they once did. Many sufferers are reduced to bystanders to their own existence, unable to work, drive, attend family gatherings, or simply play with their kids. Meniere’s causes dizziness, severe vertigo, drop attacks, tinnitus, and sensitivity to light and sounds. Meniere’s attacks leave their victims so dizzy, and unable to walk or balance, with even the slightest movement bringing hours of nausea and vomiting. If that wasn’t enough, most Meniere’s sufferers develop hearing loss and many go completely deaf.

Recently, a fellow musician and founder of the Trans Siberian Orchestra, Paul O'Neill died from the effects of Meniere's. His band mates said: "For Paul, this was a constant battle, causing him to race against time to write and record as much music as possible, before, like Beethoven, his ears ultimately betrayed him. At the time of his death, he was writing two rock operas." 

Another musician Ryan Adams, is a long time Meniere's sufferer, and has had to stop many shows just because someone in the audience used a camera flash. To a person with Meniere's, a mere flash can send them tumbling down into a severe vertigo attack lasting hours. The video link below shows one occurrence for Adams : 

https://youtu.be/c7PdZmLcbng

This April, singer Huey Lewis had to cancel his entire 2018 touring schedule because he had suffered severe hearing loss from Meniere's, making him unable to sing, or hear his bands music.

https://www.rollingstone.com/music/news/huey-lewis-cancels-2018-tour-dates-due-to-hearing-loss-w519131

It is now known, that the real reason Vincent Van Gogh cut off his ear, was because he too, was a Meniere's sufferer: "A medical report published contends that Vincent van Gogh was not mad and did not have epilepsy, as has been speculated, but had a painful inner ear disorder that caused him to cut off his left ear and eventually to kill himself."  ~ New York Times

https://www.nytimes.com/1990/07/25/arts/at-last-medicine-really-listens-to-van-gogh.html

In the research paper “Impact of Meniere’s Disease on Quality of Life” by the University of California at San Diego, researchers found that the quality of life of Meniere’s patients, while not actively experiencing vertigo, was comparable to adults with life-threatening illnesses such as cancer and AIDS. They further discovered that during periods of ‘acute vertigo’ their quality of life dropped to a point that Meniere’s sufferers were on par with non-institutionalized Alzheimer’s, Cancer and AIDS patients six days from death.

In a 2009 study on post-traumatic stress disorder (PTSD) performed by Kirby, S.E. and Yardley, L. it was found that the incidence of  (PTSD) and health anxiety, is much higher than in non-sufferers. Nearly one in eight people with Ménière’s were found to meet the criteria for full PTSD, compared to the general population where just one in sixty has PTSD. Yet, Meniere’s remains relatively unknown worldwide, and dramatically underfunded when it comes to crucial research dollars. Presently, The National Institutes of Health (NIH) have "0" dollars directly allocated for Meniere's research based on their 2018 online report found here:

NIH Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)

budget:https://report.nih.gov/categorical_spending.aspx

This is why we are reaching out to you Bono, and your U2 band mates, to read the thousands of heartbreaking comments from petition supporters and decide to help us in our cause to 'raise awareness' for this debilitating disorder. We are respectfully asking that you would consider creating a simple public service video for 'YouTube', possibly using your song "Vertigo", to help all the people suffering from Meniere’s disease. If you had another idea to help, we would be glad to listen. Your support would greatly help the worldwide Meniere's community to spread awareness for this complex disease, and hopefully increase the 'desperately needed' research dollars that will enable us to have better treatments, and ultimately find a cure. 

Right now there are Meniere's sufferers waiting in Afghanistan, Algeria, Argentina, Australia, Belgium, Bolivia, Brazil, Chile, Croatia, Canada, Colombia, Cyprus, Costa Rica, Croatia, Cuba, Denmark, Dominican Republic, Finland, France, French Polynesia, Germany, Greece, Greenland, Hong, Kong, Iceland, Ireland, India, Israel, Italy, Korea, Latvia, Lebanon, Malta, Morocco, Mexico, New Zealand, Netherlands, New Caledonia, Nicaragua, Norway, Pakistan, Peru, Philippines, Poland, Portugal, Puerto Rico, Russian Federation, Scotland, Singapore, Slovakia, Spain, South Africa, Sweden, Switzerland, Tunisia, Turkey, United Arab Emirates, United Kingdom, United States, Uruguay, Venezuela, Virgin Islands and Wales, all who have supported this petition. 

Petition Supporter:

Dr. Jose A Lopez-Escamez MD PhD

Our Meniere’s Awareness petition has received the support of the prominent Meniere’s researcher, Dr. Jose A Lopez-Escamez MD PhD who's research team in Genyo, Granada, Spain has identified the ‘first genes’ causing familial Meniere's disease. We welcome Dr. Lopez- Escamez’s support and commend his work, which brings those who suffer from Meniere’s disease, one step closer to a cure.

Dr. Jose A Lopez-Escamez is the author of 120 research studies addressing Meniere's disease and other vestibular disorders:

https://www.researchgate.net/profile/Jose_Lopez-Escamez/publications/4

The Vestibular Disorders Association

VEDA's Mission is to inform, support, and advocate for the vestibular community. VEDA envisions a global community where vestibular disorders are widely recognized, rapidly diagnosed, and effectively treated. VEDA recognizes their responsibility to be a champion for the vestibular community and to achieve measurable results. VEDA serves all people with vestibular disorders with dedication, understanding and compassion.

http://vestibular.org/understanding-vestibular-disorder/types-vestibular-disorders

 

 



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