Advocacy for children with migraine

Headache expert perspective

Migraine is the most common neurological disease and, in adults, it has the largest overall impact after stroke, and the largest effect on disability. Relative to its huge impact, society allocates to migraine only a small fraction of the resources it should be getting from the research community and the treatment infrastructure. This is in part due to the stigmatization of the headache patient and the doctors who treat them. This stigma results in low levels of advocacy relative to disease burden. Advocacy drives access to resources and policy changes that favor those with larger, more vibrant advocacy efforts.

Stigma is an attitude by society that undercuts the value of the individual with a condition or disease, poisons their identity and leads to social sanction or discrimination. Social stigma affects many diseases. Enacted stigma from public policies, and individual statements and attitudes become internalized and lead to a decreased sense of self-worth and eventually this can have profound mental health consequences. Disease related stigma impairs quality of life in several ways ( Table 1 ). It impedes the seeking of health care for the stigmatized condition, increases mental health burden, and may increase pain itself. Many diseases and conditions have been shown to be stigmatized, for example obesity, HIV, and mental illness. Stigma is intertwined with bullying.

In adults with migraine, stigma can be severe. As might be predicted for an invisible disease, stigma relates to the degree of disease-induced disability, and not to visible signs of disease. In other words, migraine becomes very stigmatized when it affects functioning in performing a social responsibility, such as work in adults, and school in children. Men stigmatize people with migraine more than women, and nonwhites stigmatize more than whites. Unfortunately, there is little data about the sources of stigmatizing attitudes encountered by children. Anecdotally many adults with migraine recall their first stigmatizing experiences in childhood. Statements from their parents, teachers and to a lesser extent their friends are recalled as hurtful and impactful in their lives.

Advocacy is public support for a cause or policy and is necessary to reverse the effects of public stigma. Parents need to advocate for their children and teach their children to advocate for themselves. Advocacy begins by educating the child and their friends and siblings about migraine, its’ impacts and treatments. Then the parent advocate should consider what advocacy activities for their kids would be helpful in school, such as talking to their teachers, a 504 plan, or an individualized education plan (IEP). Efforts to educate children generically about migraine through classroom lesson plans and teaching materials may be helpful.

Successfully changing negative reactions toward a disease takes careful thought. This process, called reframing , requires that people with a disease, or their family members, make themselves visible, and mobilize. Successful efforts include: HIV, autism, breast cancer, and multiple sclerosis. For migraine, such efforts have not succeeded at a societal level because migraine re-branding has not mobilized the migraine community to act.

A more realistic goal is to reframe migraine for the child, the family, friends, and school. In children, there have been successful efforts to educate the community through art programs and through adolescent camps.

Minen developed, piloted, and tested the Headache and Arts Program. This 2-week Headache and Arts Program with lesson plans and art assignments for high school visual arts classes included an age-appropriate assessment to assess students’ knowledge of migraine and concussion. The program improved the learners’ knowledge, which they retained over 3 months. The use of a visual arts-based curriculum may be effective for migraine and concussion education among high school students.

As an outgrowth of clinical care, we developed the Miles for Migraine Youth Camp, a recurring 1-day event for adolescents with chronic headache and their parents. Migraine Camp was developed to provide expanded headache education, teach coping strategies for living with chronic pain, and encourage development of a supportive community for adolescents living with chronic headache disorders and their families. The creation and curriculum of the Camps at the University of California San Francisco and Children’s Hospital of Philadelphia are described in our manuscript, along with patient and caregiver feedback. Overall, feedback was positive. Teens reported feeling less isolated and more prepared to cope with headaches using new strategies. Both patients and caregivers consistently described benefit from connecting with others who experience similar challenges. The Migraine Camp teams at both institutions found it feasible to conduct the Camps 1–2 times per year using existing resources, but noted that to scale it to a more regular event additional administrative and/or volunteer support would be needed. In summary, the experience has been positive for patients, caregivers, and staff, and we hope that this manuscript can serve as a “how to” model for similar events at other institutions.

In the office setting, clinicians should make advocacy part of the treatment plan. Turning the patient’s self-image from migraine sufferer or victim, to migraine warrior can improve self-efficacy. Self-advocacy involves getting the accommodations that maximizes their ability to learn, or participate in other important activities, and educating schools as well as family and friends. In some cases, directly discussing stigma and self-stigma may be helpful in reducing negative self-talk and improving self-esteem ( Table 2 ).

Family perspective

In 1985 at age 24, I was diagnosed with chronic migraine. No one—not my doctor or any other healthcare professional—sat me down to explain the reason they were prescribing me an antiseizure medication, even though I had migraine, was because there was so little research being done in this field and there weren’t any medicines specifically designed to treat this disabling disease. Over the course of a year my doctor prescribed 12 different medications—none of which worked.

Fast forward to 2013, when my daughter Sydney was diagnosed at age 16 with chronic migraine, and her doctor prescribed the same antiseizure medication I had received back in 1985. When I questioned her on this she replied, “There is nothing new for migraine.” Incredulous, my daughter turned to me and said, “Mom we have to do something about this! Why am I getting the same old medication you received so long ago?”

At that moment I realized how unfairly the medical system was treating my child. Why wasn’t there a medication that was derived from research specifically for migraine? The reason there are so few treatment options developed specifically for migraine is because it receives little funding for research relative to the disability it causes. Furthermore, diseases like breast cancer and HIV/AIDS received more research funding when patients began to advocate, but there were only a few options for migraine advocacy up until several years ago.

On the drive home we discussed options and decided to find a race for migraine, but to our dismay we only found one in the entire country and it was in San Francisco. When I contacted the founder of Miles For Migraine—Eileen Jones, a nurse—I asked her if I could bring the race to Philadelphia. She told me I had no idea what I was getting into and she was right. Putting a race together has more intricate moving parts than I realized and I soon understood that I was in way over my head. However, watching my daughter spend day after day in a dark room while missing school, made me fight all the harder, to bring this race to Philadelphia which we succeeded in doing in the fall of 2013.

As time prevailed, I came to realize that I would need to educate everyone I encountered since the only way to a cure is by reducing stigma, and the only way to reduce stigma was to open my mouth and make a lot of noise. Advocating requires effort yet the plus side is that advocacy made me feel more connected to others experiencing the shame, stigma, and isolation I was feeling. My daughter also felt empowered when she spoke up about her needs to school administrators.

Advocacy is a vital part of helping to find a cure for migraine and other headaches. You don’t need to begin your own nonprofit to be an effective advocate, as there are plenty of ideas and resources available. Discover what works for you and your family, and then educate and enlist friends and co-workers to join you.

Advocacy plan of action

• Share your story well— It’s vital to talk to friends, family and schools about migraine. However, speaking up about an invisible disease is often fraught with fear due to the pervasive stigma migraine receives. Do it anyway. You can learn more on how to speak about migraine by visiting the websites outlined below.

• Get on social media— Posting about your actions and educating others on social media is a low effort act of advocacy.

• Attend live events— All of the organizations in the next section offer live, patient—participatory events. It’s vital to attend these because we need to make more noise and knock on the world’s door so the perception of migraine changes. This is the same plan of action other stigmatized diseases took, such as HIV/AIDS, and breast cancer. Have you heard of those diseases? Yes! They began as “whisper diseases” but now they are diseases that have become the leaders in research and NIH funding. This could not have happened without advocates in the public eye.

• Volunteer— Every nonprofit needs help.

• Join a support group— As a caregiver , you need to remember to put your own oxygen mask on first. Practice self-care and serve as a role model for your child to emulate you. The organizations below offer links to online support groups and other information for helping you and your child.

• Education— Your time with the health care practitioner is limited, so come prepared with questions that you cannot find answers to on your own.

• Donate— Nonprofits are dedicated to education, research, and advocacy. They are the forces that will continue to work with patients and caregivers to help find a cure.

In summary, addressing stigma and the need for advocacy are intricately connected in migraine. Advocacy is necessary to gain necessary accommodations at the individual level, but is also important locally, in school, in the family, in the community, and nationally. Advocacy should be considered an essential part of the treatment plan. One can reasonably expect that teaching advocacy and reducing stigma can improve the child’s health and prevent a life-time of self-stigmatization and the complications that follow.

Advocacy organizations