June is 'Migraine Awareness Month'
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This letter commemorates Migraine Awareness Month, an event that has gained substantial traction over the last several years. "Awareness" takes many forms when considering this multi-faceted disease. We are going to try parse this out a bit and synthesize some of the most noteworthy components of "awareness":
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The Personal Toll in Suffering
The numbers vary, but 36 Million migraineurs in the United States seems to be an agreed upon number. How do you quantify suffering of this magnitude? 36 Million chronic migraineurs who experience disabling pain 15 days in a month?
That does not include the related illnesses such as vertigo and nausea that often accompany the migraine attack. The migraineurs quality of life is completely compromised across all significant domains. Other, related illnesses on the migraine spectrum compound the misery. Adding to the difficulty migraineurs have to endure is the "disgrace" of the stigma, which can emanate from co-workers or even family members.
As we know, research into migraine disorders is woefully underfunded. It is not a difficult conclusion to draw that because of incorrect societal attitudes and stigma; many important research opportunities are overlooked at the highest levels. This nasty cycle of suffering, stigma, and lack of study must be broken! Yes, there is some hope on the horizon in terms of preventative medications but they are years away, and could be prohibitively expensive. Excellent minds are working towards a cure, but they are few in number and generally underfunded. One prominent researcher told me this is so because migraines are not lethal, like cancer, AIDS, or heart disease. Perhaps not, but more than one migraineur has told me they prayed for an end to their suffering. Some have sadly taken that final step.
Be aware that 36 million of your fellow US citizens endure this indescribable pain daily, many of whom could be your family and friends, and not enough is being done to prevent or cure it.
Consider this a call to action.
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The Economic Toll
Statistics and numbers can be mind-numbing without a real connection to the lives we lead. So, as I share these statistics with you, the product of extensive studies done by American Migraine Prevalence and Prevention (AMPP) and the International Burden of Migraine Study (IBMS) among others, I ask you to try and make a real life connection:
- The World Health Organization defines migraine as one of the 20 most disabling illnesses.
- Per the IBMS there are 44.5 million migraineurs in the US, and 4.9 million in Canada.
- Per the IBMS the average direct cost per year for migraine-related medical treatment per chronic migraine sufferer in the US is over $4000.
- Per the AMPP there are 113 million lost workdays due to headache/migraine.
- Per the AMPP the economy loses $13 Billion annually due to compromised worker productivity, attributable to chronic migraine suffering.
- Despite these unnerving numbers, the NIH devoted 20 Million in 2015, which is less than 1% of their research budget portfolio to research on migraine disorders. By comparison, NIH funded twice that amount to West Nile Virus, with 2000 cases in 2015 (compared to 36 million migraine )
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The Hidden Cost to Caregivers and Families
How is it possible that such a devastating illness in all its expressions could not have far-reaching, negative effects in all relationship areas of a migraineurs life? It's not, of course. Only recently have we begun to see research that looks at subjects like family burden and the disruption chronic migraine causes in the lives of caregivers. Few of us lead totally isolated lives, devoid of familial connections and other work and relationship associations. More often the opposite is true. The vast majority of people are interconnected with others through family, relationships and work; these relationships are all compromised by migraine suffering. When you add it up. that's a lot of people. One caregiver put it well: "my life has been hijacked".
In the United States alone we estimate 36 Million migraineurs. Other estimates place the number higher. If we allow ourselves some statistical latitude and cede that each migraineur has two relationships affected by their migraines, the numbers grow exponentially. For the purpose of this argument "collateral" means a person in some level of a relationship with the migraineur. Following this line of reasoning, there are about 108 Million people, including the migraineurs whose lives are negatively impacted in a variety of ways. The population of the United States is 320 Million (2015) at last count. Again, following our assumptions: 39% of the US population have their lives disrupted by migraine disorders. Remember that is based on two collaterals only. Most people have more than two relationships. So, if that is the case, the number affected would rise accordingly
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Now admittedly that is a pretty astonishing number. One may question what does "disruption" mean? Migraineurs and those that live and work with them would not have any problem answering that question. So, in deference to the 50% or so of the US population that may not understand the nature and level of problems caused by migraines and experienced by collaterals, what follows is a less than complete list. Broken relationships, lost jobs and income, family arguments, emotional distance, cancelled family events and vacations, friendships lost, loss of self-esteem (both migraineurs and collaterals), anxiety and a host of depressive symptoms, constant worry, and feelings of inadequacy. This list could be expanded greatly I am sure. But one consequence stands out for me personally in my life with a chronic migraineur: the frustration experienced when I am forced to stand by and watch my loved one suffer while being unable to help her in any way.
So please be
aware. Awareness implies responsibly. Do something. Join a movement (like ours), donate some funds if you can. Talk it up. Write a letter to you congressmen. Get on board.
It's really up to you.
If you want to help please contact us at:
Association of Migraine Disorders or visit
our website to volunteer or donate .
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Calendar of upcoming local events
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