Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.
Biology: a battle & a beauty
Life with Menieres Disease; a labyrinthectomy and absence of the an inner ear
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.
One study, found that the quality of life of a Meniere’s patient was comparable to adults with life-threatening illnesses.
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 patients, six days from death.
The study, titled “Impact of Meniere’s Disease on Quality of Life” stated:
“Meniere’s disease patients are among the most severely impaired non-hospitalized patients studied…Patients describe impairment in travel, ambulation, work and other major social roles as well as trouble learning, remembering and thinking clearly.”
University of California-San Diego (2000)
My Life with Meniere’s Disease
From the first attack, scared and confused, life became shaped by fear.
An unpredictable ‘malfunctioning merry-go-round’ spinning faster than the speed of light.
Each day … negotiating the unsettling sensations of personal and public transport, navigating the ‘sensory overload’ of routine places, socialising with distorted hearing and intense exhaustion.
Meniere’s Disease is …
Invisible. Embarrassing. Difficult to Explain
Words failed me. So I doodled.
