“Migraine is an ever-changing presence in my life. I’m so grateful for the work of advocacy organizations like this, who have taught me so much about how to manage this debilitating disease and reclaim my quality of life.”
- Person with Migraine
Every year Hope in Pain focuses on new or extended migraine initiatives through our patient-facing website, Migraine Meanderings. Each initiative is designed to help reach different demographics of people who live with migraine, as well as people at any stage in their migraine journey. Our goal? To reach those people who lives have been most impacted by migraine disease, as well as those for whom the disease has not yet progressed or "chronified." We focus on:
- Raising awareness about migraine disease
- Helping with disease management
- Reducing stigma
- Addressing access barriers
- Combatting misinformation
In addition to the creation of patient resources such as the Migraine Treatment Toolbox and the Migraine Action Plan, our projects often focus on under-represented demographics such as men, young adults, adolescents and seniors. This focus enables us to maximize the outcome and our mutual goals, as we seek to improve disease management and quality of life for those whose voices often are not heard. We are committed to putting a real face to this disease as we work to inspire people with migraine to find ways to thrive, not just survive, and to hold on to hope.
Empowering Patient Voices
“Nothing works for everyone, but everything seems to work for someone.”
That is a phrase we use often in our migraine communities. While we believe in creating an open space for patients to be heard, we also foster a community of balance. Part of our online communities involves an emphasis that those who may not have had a positive experience with a treatment do not necessarily represent the experiences that other individuals will have on that treatment.
Our branded patient communities, Migraine Meanderings and Hope for Migraine are where migraine patients with the strongest interest in new treatments congregate to learn, and we are the leading edge of understanding the patient mindset when it comes to both disease management and new treatments in the migraine space.
In this project we ask patients to come and share what life is really like with migraine
This project seeks to show the reality of migraine and its often devastating impact on lives
In this project, patient advocates about some of the hottest topics faced by people with migraine
i graine is so much more than "just a headache." When we speak out about this condition and the many ways it impacts our lives, we raise awareness, help others feel less alone, and create real change. The Empowering Patient Voices™ initiative highlights authentic depictions of life with migraine, and works to bring migraine disease "out from the shadows." Please visit our patient-facing website, Migraine Meanderings, for more details and links to the videos produced.
Since 2018, we have entered a new frontier of migraine treatment that has been both much-needed and much-anticipated. However, along with this new frontier, there are unique challenges to be faced. These challenges together often result in poor outcomes for migraine disease management:
- A large, complex maze of new information to navigate, together with misinformation (often presented as evidential)
- Lack of easy access to Certified Headache Specialists who are better equipped to manage migraine disease.
- A communication “disconnect” between patients and healthcare professionals.
- Misunderstanding about the importance of a holistic approach, especially bearing in mind comorbid conditions.
- Inadequate resources to manage the complexity and wide spectrum of migraine disease.
- Lack of patient empowerment, resulting in reduced access to appropriate treatments and lower treatment compliance.
Empowering Patient Voices™ encourages and supports patient advocacy from an exclusively peer-to-peer perspective through patient-driven information that is easily relatable and emphasizes connection. It creates openness to information and emboldens people who live with migraine and other headache disorders.
The initiative reaches out to patients at any stage of their "Migraine Journey.” Using an existing social media community of over 50,000 members, Empowering Patient Voices is making a desperately-needed impact on the lives of people who live with this complex and debilitating disease.
