Youth Ambassador Lexi DiMarino Shares Perspective on Pediatric Migraine
Lexi DiMarino has been living with migraine since she was 6-years-old. As the AMF Youth Ambassador, she is sharing her experience about what it’s like to live with migraine as a child and adolescent. Her goal is to provide perspective that may make it a little easier for other kids living with migraine.
Lexi is a recent high school graduate, and will start college in the fall. She hopes to provide experience and perspective to families and children who are living with pediatric migraine as well as adults who might not understand what it’s like to live with migraine as a child.
“Having a migraine as child is scary and lonely,” she said. “I think from my experiences with migraines, I can help other kids or adults understand what a kid might be going through.”
Lexi and her family didn’t have a roadmap to follow after her diagnosis.
“It’s very hard for families to find support, and my family did it. We figured it out. But it took a while and a lot of resources. Throughout my experience, we’ve tried a bunch of different things,” she said.
One thing that Lexi wants people to know about pediatric migraine is that something that would be normal for one child can be completely different for children and adolescents living with migraine. For example, studying via screens could be triggering and especially hard to do when you have a migraine.
As she sets off for college, she is beginning to think about how to manage her migraine as an adult alongside her studies.
“Visiting colleges was different for me than it would be for any other kid because I have to focus on what kind of foods they have there. If I get a migraine, what can I do?” she said. “There’s travel, there’s a whole bunch of other little niches that you don’t realize affect a person with migraine a lot more than you think.”
Migraine in children often is undiagnosed
Migraine in children and teens often goes undiagnosed because children may not be able to understand or explain the pain. As someone who has lived with migraine since she was very young, Lexi provides a unique perspective and helpful advice for those just starting their journey.
She encourages kids to focus on the things that will help them feel as good as they can such as getting enough sleep, eating healthily, and exercising when they feel well enough to do so. She also encourages kids to talk about how they are feeling because with migraine it isn’t always easy for people to know when you aren’t feeling well.
“You’re not going to be able to see it on someone’s face, so it’s all about speaking up if you’re uncomfortable. Don’t just dismiss how you feel because other people might not understand what you are going through, especially if they can’t see it or haven’t been through it themselves.”
Destigmatizing migraine and creating understanding
Having a support system for those living with migraine is so important.
“It is so beneficial to have a support group or any sort of mentor. Looking up to someone who’s been through it and understands where you’re coming from is huge,” she said.
Speaking up about migraine also destigmatizes the disease, according to Lexi since she says, “it’s a lot easier to empathize with people and understand what they went through.”
She thinks that physicians can also learn from more open conversations about migraine. She was once hospitalized for three-months for migraine when she was in sixth grade. Although the neurologists understood migraine and took steps to manage triggers like lights, other physicians didn’t always understand and would shine a light in her eyes when checking on her. Her family often had to explain her sensitivity to light to these other physicians.
Lexi is looking forward to sharing her experience and creating more understanding about migraine in her role as Youth Ambassador. She will be writing some blogs and has some other ideas about how she can share the knowledge she has gained from living with migraine as a young person.
Follow along on our social media channels for more information.
