The world is full of pink ribbons, yellow wristbands, and walks for a cure. Chronic disease and tragic illness are an unfortunate part of life that surrounds us always.
Raising awareness has always been an important strategy for winning the war against disease. It directs research dollars towards new treatments and cures. It empowers the suffering, making them feel heard and understood. It also encourages good people to contribute donations to the cause, slowly but surely ticking the needle of progress forward, one dollar at a time.
The problem, however, is that there are many rare diseases that lack the “cultural sex appeal” of the more mainstream and well-known conditions in the minds of the general public. It doesn’t help that many chronic illnesses are invisible from the outside. It’s hard for the average person to wrap their mind around something they can’t see.
Few conditions fit this description better than Meniere’s disease.
What is Meniere’s disease?
Meniere’s disease is a highly complex illness with no cure and no known causes. It is not fatal but ruins lives all the same. It affects the inner ear and causes a severe disruption in balance, hearing, and quality of life.
Symptomatically, most people experience “attacks” of violent rotational vertigo (feeling like the room is spinning), a feeling of fullness and pressure in the affected ear, loud ringing known as tinnitus, and progressive hearing loss. Many sufferers also report nausea, cognitive impairment (brain fog), fatigue, anxiety, and depression.
Meniere’s disease affects .2% of the population, roughly the same rate of incidence as Multiple Sclerosis. Yet virtually no one has ever heard of Meniere’s disease.
To make matters worse, in the last several decades’ very little progress has been made towards research and development of treatments for this terrible illness.
And terrible it is. Back in 2000, researchers at the University of California-San Diego published a study titled “Impact of Meniere’s Disease on Quality of Life.” It highlighted the severity of the disease’s impact on physical and mental health in patients who did not respond well to treatment.
They found that the quality of life of a Meniere’s patient, while not actively experiencing vertigo, was comparable to adults with life-threatening illnesses such as cancer and AIDS. Even more shockingly, they discovered, that during periods of acute vertigo, quality of life dropped considerably further. Putting it on par with non-institutionalized Alzheimer’s patients as well as with Cancer and AIDS patients, six days from death.
Even the researchers were stunned by the results. According to the study, “Meniere’s disease patients are among the most severely impaired non-hospitalized patients studied thus far … Patients describe impairment in travel, ambulation, work and other major social roles as well as trouble learning, remembering and thinking clearly.”
It’s hard to imagine how such a devastating illness can exist and remain virtually unknown at the same time.
There is Hope:
I paint a grim picture, but, of course, there is so much hope. Many people respond amazingly well to specific lifestyle changes and pharmaceutical treatment. There are surgical approaches as well, when all else fails.
A great many people learn to manage their symptoms, or at the very least, find a way to live with their disease. (This blog was started for a reason, right?)
What most patients so desperately seek is simply to be heard. To be understood. To be validated. To be accepted. Raising awareness of Meniere’s disease is the catalyst.
The good news is that research efforts are finally increasing, and new treatments are being developed right now. One shining example of this is the biotech company Otonomy:
In 2008, Jay Lichter, Ph.D., a partner at Avalon Ventures and biotechnology industry veteran, experienced his first severe attack of vertigo. While driving, he became severely disoriented and had to pull to the side of the road. After multiple doctor visits, he was diagnosed with Ménière’s disease and quickly experienced the limitations of available treatments. With his physician, Jeffrey Harris, M.D., Ph.D., chief of the division of otolaryngology-head and neck surgery at the University of California, San Diego, and several other experts in the field of otology, Dr. Lichter founded Otonomy to bring new treatment options to patients with otic (ear) disorders.
Our mission today remains the same – to develop and commercialize novel and best-in-class therapeutics to address the significant unmet medical needs in the emerging otology market.
With companies like Otonomy conducting clinical trials on new drugs and drug delivery systems, there are plenty of reasons to remain hopeful.
Raise Awareness Today:
So the question remains, what can we do, right now, to raise awareness?
Recently, Judy McNamara Tripp launched a change.org petition to raise awareness of Meniere’s disease, and if successful, could raise it in a big way. Judy is collecting signatures to ask BONO and U2 to help us raise awareness by either filming a short public service announcement for YouTube or by reading the following statement before they perform their hit song “Vertigo”:
“We need to find a cure for the millions who suffer lives filled with vertigo and deafness caused by Meniere’s Disease.”
It only takes a minute to sign and if successful will raise awareness of Meniere’s disease in a big way.
The petition is supported by Dr. Antonio Lopez Escamez, whose ground-breaking research recently identified the first gene directly linked to Meniere’s disease. It is also supported by the Vestibular Disorders Association.
Judy’s efforts exemplify the kind of creativity needed to give Meniere’s disease the big PR push it has long deserved. If anyone else has a creative idea to raise awareness, be sure to leave a comment and share it with the community!
Help us raise awareness by spreading this post far and wide. Be sure to share it with your family and friends!
Together our voices will be heard.