Shades for Migraine - Interview with Dr. Rick Godley
“We propose that everyone whow lives with migraine disease or cares about someone who does wear a pair of sunglasses all day (hanging around your neck is okay) on June 21. Take a picture of yourself wearing those sunglasses and post it #ShadesforMigraine. Challenge your friends to show their support for migraine.”
Unique medical professional perspective
What is the Association of Migraine Disorders and how does this organization support the migraine community?
The Association of Migraine Disorders is only one among many nonprofit organizations supporting those who live with migraine disease, raise awareness of the disease in the general public and offer resources for medical professionals. But we are different because we represent the perspective of those medical specialties that are not usually associated with migraine disease, such as ear, nose and throat doctors, pediatricians, primary care physicians, emergency room doctors, gastroenterologists, gynecologists and more.
What is your Shades for Migraine day all about and what's the importance of holding it on June 21?
We are launching a new international migraine awareness campaign in June. This is a unique campaign because it is an effort to use a common item, sunglasses, to represent the struggle against migraine and to say, “Migraine deserves attention”. We are asking the broad public to have fun wearing any kind of wacky shades that they want all day long on June 21, the longest day of the year. We are spreading the word by using iconic, cute and funny images of people and animals wearing sunglasses in unusual locations. The primary goal is simply to give people an opportunity to be creative and iconoclastic with a pair of sunglasses. We hope that some will be inspired to share their own pictures of wearing sunglasses via #ShadesForMigraine. One goal is to have interested people visit a website where participating organizations will be listed. We hope to have a comprehensive list of migraine-related organizations in one location. People can connect with those organizations that look appealing. The second goal is to use sunglasses, preferably with purple frame or tint, to help rally the fragmented migraine community.
Why do you want to spread awareness?
What motivated this effort was the absence of migraine in the common public discussion of health causes. Along the way it occurred to be a chance for the migraine community to have a method to coalesce. Having participated in Headache on the Hill in the past, I can see the value of having a method to demonstrate to our political leaders that there is a large number of people who care about migraine disease. Now I hope that the Shades for Migraine website could be a shared space for people interested in the subject to find what is available in terms of resources. With time it might be a good "shopping" center for information sources.
Spreading the word
What do you feel people still don't understand about living with migraine?
For an inherited disease affecting one out of every 4 families, migraine disease remains one of the most misunderstood diseases. For most people, it is synonymous with a bad headache, but its symptoms can involve all of our senses and many body parts. And it is easily confused with other diseases. The underlying cause of migraine disease appears to be a mixture of many genetic flaws. Thus, the disease affects people’s lives to many different degrees.
This poor understanding of migraine has a cost. Management of pain is the single most costly US health problem and headaches alone cost the US over $30 billion annually. In addition, there is over $17 billion in lost wages each year due to migraine.
What kind of information do you think the medical community still needs to know about migraine?
Primary care providers, including midlevels and nurses, need to be more active in the management of migraine disease because there are not enough headache specialists for the number of people living with migraine (roughly 500 for 36 million people).
The other challenge in the care of migraine is that, while we fight for more funding of migraine disease, we need to attract new scientists into the field of migraine research and nurture their early career. We have to prove to the medical community and the world that migraine disease is a very serious and important disease and that with the maturation of genetic screening and other treatments, we should see this complicated disease as an opportunity, not as a professional career quagmire.
Do you think this campaign will reach the medical community as well as the patients?
Most of this year's World Migraine Solidarity Day is focused on the general public, but we have reached out to about a hundred physicians from different specialties whose email addresses I had collected because they had published an article related to migraine to let them know about the campaign. We are now developing a poster that we will send out to the Headache Centers in the US. We hope to expand this reach to all headache specialists next year when we have more time for this effort.
Have you shared your migraine story with us yet?