With June being National Migraine Awareness Month, I felt compelled to share critical information about migraine disease, and to encourage migraine sufferers – also known as “migraineurs” – to demand more attention, empathy and financial support for their illness. Migraineurs should band together and ask family members, friends and co-workers to join them in rallying for change.
Not only do migraineurs experience symptoms of debilitating headaches, but also facial and ear pressure, loss of balance and more. Migraine is an inherited disease that causes the nervous system to be overly sensitive. The brain overreacts to a stimulus, such as stress, lack of sleep or food, and weather changes. Migraineurs endure episodic intense localized head pain, and can also experience discomfort with light, sound or smell – often followed by nausea, foggy thinking and fatigue. Others have more long-lasting and annoying symptoms of pressure, disorientation or aching.
Migraineurs feel miserable and yet it takes an average of seven years for them to get a correct diagnosis. Even then, only half of migraineurs are satisfied with their treatment. This is a failure of our medical system to 36 million Americans – about 12 percent of the population. And where is the outcry?! The National Institutes of Health (NIH) provides migraine-related researchers half the funding of any other major neurological illness. In 2014, for example, the NIH spent only $20 million on headache research – less than one-tenth of one percent of its budget.
Migraineurs and their supporters need to take action.
For starters, they should join a migraine advocacy organization to amplify their voices through a unified effort. With one out of every four families including someone suffering from this condition, family routines and obligations are consistently disrupted by this recurring illness. In a survey of more than 2,000 migraineurs – 73 percent believed their headaches adversely affect their families.
The debilitating symptoms caused by migraine disease also impact the workplace. The business community should be more actively involved in a call for national action – especially given the estimated 25 million work or school days that are lost every year to this disease, resulting in an estimated $13 billion a year in compromised worker productivity. Many people drop out of the workforce as a result of their suffering from migraine, making this neurological disease among the top 10 most common causes for disability.
Health policy leaders should also care more. Migraine costs the medical care system more than twice the price of care than an average person. Migraine sufferers use the medical system twice as frequently as non-migraine sufferers and cost six times the normal amount for testing and treatment. The misdiagnosis of sinus pressure as a bacterial infection rather than a neurologic disease, like migraine, adds significantly to the mismanagement and cost of antibiotics.
Medical professionals – including medical specialties and migraine-related organizations – need to learn to recognize and manage migraine disease better by collaborating on migraine education and research. Why? Because there is no definitive diagnostic test for migraine, no single effective treatment, and only half of migraineurs are satisfied with their treatment. Patients suffering from the lesser-known symptoms of migraine disease rather than the traditional headache associated with the illness, usually seek help from their primary care physicians, emergency room caretakers, ear, nose and throat doctors; gastroenterologists and other specialists who have little or no formal training in recognizing – much less treating – migraine disease.
In addition to joining and supporting one of the many existing migraine organizations and rallying for more research funding from NIH, I urge all migraineurs, and their family members and friends, to make a national statement during Migraine Awareness Month. On Monday, June 29, wear something purple – the color that represents migraine – and wear a pair of sunglasses on your head or around your neck to represent the darkness that migraineurs often retreat to during attacks. Share a photo on the Association of Migraine Disorders’ Facebook page. Here in Rhode Island, the State House dome will be purple through June 30. Stand together, make migraine disease known.
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