Voice-over: Welcome to Spotlight on Migraine, a podcast series hosted by the Association of Migraine Disorders. Through personal stories and interviews with experts, we expose the true scope of migraine by exploring symptoms, treatments, research topics, and more. This episode is brought to you in part by our generous sponsors, Amgen, Novartis, and Alder BioPharmaceuticals.
Voice-over: In this episode, we talk to the Henry family who has honored the memory of their loved one lost to migraine disease with the creation of the Danielle Byron Henry Migraine Foundation. The Henrys are committed to instilling hope in people with migraine through their educational and awareness-building programs, including their support of the Headache School and the Shine Her Light events.
Since 2015, Amgen and Novartis have been working together to develop pioneering therapies in Alzheimer’s disease and migraine. Together, Amgen and Novartis share in a mission to fight migraine and the stereotypes and misconceptions surrounding this debilitating disease.
Molly: Hello and welcome. Today we’re speaking with the founding members of the Danielle Byron Henry Foundation. Welcome to Dr. Dan Henry, Diane Henry, and Elizabeth Henry Weyher.
Dr. Dan Henry: Thank you for having us.
Diane Henry: Thank you very much.
Elizabeth Henry Weyher: Thank you.
Molly: We’re so glad to have you here today. Henry family, you have been significantly impacted by migraine, and now you are making your impact on the migraine world. Tell us a little bit about your migraine story.
Dr. Henry: Well, I guess it goes all the way back 30 years plus. Our youngest child, Danielle, developed migraines from a very young age — in retrospect, probably abdominal migraines before she was even 5 and then going on to where she started having classic migraines when she was 8. That started our journey trying to find help for her because every year she got worse and worse, and when she was about 11, it got severely worse, to the point that she had to be hospitalized for over a week with intractable migraine.
I’m a family physician, initially. I’ve been a family physician for 42 years, but then I started spending more and more of my time trying to find answers for her and for other patients that I had who were suffering with migraine disorder. Since that time, through her journey, we ran into a lot of stumbling blocks. Hard to find people who knew much about migraine. You’d find migraine experts; it was hard to get back in to follow up. There was a lot of delays. We travelled around the country. She just every year was worse and worse despite trying every treatment modality that was then available, and then you’d go off the grid. You go outside the box to experimental treatments, etc. By the time she was in high school, she was very debilitated and missed much of her high school years and had a stroke her senior year in high school, and it ended her life.
At that time — since that time, I didn’t plan on becoming a headache expert, but I had become one and continue to do so. So over the next two years, I transferred more and more of my practice to straight migraine, and for the last 10-plus years, all I do is complicated headache and migraine in children, adolescents, and young adults.
Diane: When Danielle first became sick, I of course tried to figure out anything I could. I had stacks of books from the library on nutrition, trying to figure out what would be good. We tried to work with the schools, but there really was no realization in the schools that you need to make accommodations for migraine disease. It was just a headache. So things like not being able to miss homeroom, which isn’t a really important class, and go at 10:00 when you have your first science class, and sports teams — accommodations that if you missed practices, even if you had good reason for it, but you felt good on game day, you couldn’t play.
Those are heartbreaking things for a mom, really, to see your child go through that. You want to make the best life you can for them even though they’re suffering with a very serious disease. You’d like to give them good times. That’s something that’s really hard to get accommodations for in the schools. So that’s going to be one of our main focuses this year.
Dr. Henry: A few years back, I was doing straight headache work and [inaudible] 20 to 25 headache patients a day, and we decided we needed to do something more, Diane and I and Elizabeth. So that’s when we decided, really, that we needed to start a foundation. And there were a lot of things that we wanted to do because you’re helping people each day, but you realize that the vast majority out there — when you realize it, there’s only about a thousand headache experts in the United States, and we’re talking about roughly 40 million Americans with migraine disease. The numbers don’t add up.
So that’s when we really decided that we needed to get the word out and to raise awareness about the severity of the disease. And I try to stress to patients when I talk to them, “This is not just a headache. This is a serious neurogenetic brain disorder,” and that’s one of my favorite phrases because I think it really gets the point across that they realize they don’t have control, because a lot of them have been told all sorts of things, that if they’d be stronger, they’d relax, they’d do this, they wouldn’t have this disease, and that’s not true. That led on to the Headache School, which we’d started, and we’re funding the Headache School with the University of Utah, and we’re hoping to get that to really go beyond our community and more nationally.
Molly: What can you tell us about the Headache School and your plans for that?
Dr. Henry: Well, the Headache School, we started about two years ago now and in conjunction with Kathleen Digre and the University of Utah Headache Center at the U, and we’re the financial source for the Headache School, and we got it going. We have guest lecturers each month who come in and talk about specific topics, whether it’s chronic migraine, new treatment, etc., and so that’s a lecture for about an hour. Patients can come. They can also — now we have it live-streamed on YouTube because we have a lot of patients outside the area, and so we have that live-streamed, and then those go into a video library so people can go back and reference specific topics and watch the lectures.
Diane: It’s an incredible opportunity to be able to question some of the biggest experts in the field.
Dr. Henry: And then one of the most popular elements of it is — the lecture’s for an hour and then immediately following the lecture is an hour with — I have a phenomenal restorative yoga instructor, and so patients bring in their yoga mats, and they do mindfulness and, really, self-hypnosis. She does some cognitive therapy, and that’s moving on now. We have a PhD psychologist who is doing a mindfulness program in 10-week segments also once a month, and it’s totally free to the public.
Molly: What an incredible opportunity, and you mentioned that is free. So can any migraine patient just click in online and access that?
Dr. Henry: Absolutely.
Diane: All of them are available on YouTube.
Dr. Henry: And it’s all linked through our foundation.
Molly: That is incredible. Let’s talk a little bit about how you have helped with the Migraine Toolbox. You have provided monetary assistance with AMD to help providers diagnose migraine. Talk to me a little bit about that and why it’s important to all of you.
Dr. Henry: I’ve been struggling, feeling that we need to educate healthcare providers. The average medical student gets about one or two 1-hour lectures on headache in their entire four years, unless they’re a neurology resident or do a neurology rotation with a neurologist who does headache. Otherwise, in post-graduate education and residency, they get no further education in headache. So consequently, I feel strongly that primary care doctors need to take the lead in headache and that most headache patients can be diagnosed and treated very effectively by primary care docs if they have the tools. And I think it’s of tremendous use for primary care doctors, everyone from pediatricians to family practice to internists to otolaryngologists to OB-GYNs. OB-GYNs receive no education on headache through their whole training, yet every day, they see only women, and 18% of them have migraine disease. So it makes no sense that they don’t have the tools also.
Elizabeth: And so the Migraine Toolbox being online as well, and it offers continuing medical education credits to any nurse practitioner, physician assistant, primary care physician. It’s accessible online. They can do it on their own time. To have those tools at the ready is incredible, and we hope more people take advantage of it.
Dr. Henry: I’ve already gone and advertised in Utah, which is where we’re from, and the Utah Academy of Family Practice — it’s in their quarterly flyers, emails, and in their mailed-out magazine — so that we have a lot of physicians and PAs and nurse practitioners now in the region who are doing the course.
Molly: Dr. Henry, I love hearing it from the physician’s perspective, but I’m curious, as a mom yourself, Elizabeth, and Diane, as a mother, why’s it important that more physicians get education about migraine.
Diane: You take your children to pediatricians or family practitioners in their young years, and if their symptoms are properly recognized and diagnosed, then you’d be able to start the treatment for their disease then instead of just thinking they have a virus or — a lot of children who present with abdominal migraines go through a myriad of tests to try and diagnose a [gastroenterological?] disease when, in reality, it’s migraines, and there are things that could very effectively treat that. And the sooner you start treating that, the less chance it goes into severe headache disease.
Elizabeth: For me, I think it’s, too — it’s allowing those pediatricians and those family practitioners — they too can act as advocates for the children, in addition, and support the parents in doing that. As a parent, it’s really difficult when your child has an invisible illness and you want to support them. You want to believe in them. But if you don’t have a physician saying, “No, I know exactly what this is. They’re having abdominal migraines. Try X, Y, and Z, and if that doesn’t work, we’ll go back and do something else. And I’ll help you support your child in school. I’ll write letters for you asking that they have access to water so that they aren’t dehydrated or anything else to help them throughout the day.”
Molly: I love being able to hear from multiple perspectives, and you all have great insight on this. Let’s continue to talk about the Danielle Byron Henry Migraine Foundation. Elizabeth and Diane, can you talk to me about what it means to you?
Diane: Well, it’s a way to honor her life and her struggles. She was an amazing girl, and she was just this bright, blond, really up personality, and she had a true light that just emanated from her. And that’s where we got the Shine Her Light from, and it’s honoring her struggle. And I look at other families, the moms who are dealing with and their heartache over what their child is going through, and that’s what this foundation means to us, that it gives hope. In another interview, I think I said that I never want another mom to feel they’re losing hope, because that’s where we were a number of times, and if we can help with that, it means everything to us, so.
Elizabeth: And if we can share her journey, and in sharing her journey, we become much more vulnerable, but at the same time, we help so many people by sharing our experience, and we honor her and keep her spirit alive while helping others who are having a similar struggle. And to help people to have hope is a huge thing.
Elizabeth: It’s huge just to believe in someone.
Dr. Henry: And now there’s so many new things out there. We need to get the education out to families and — because a lot of people have really given up. You see people all the time who don’t even bring it up to their doctors anymore because nobody’s listening or nobody acknowledges what’s going on. And now there’s so many new things and a lot of things on the horizon to be positive about, and nobody should come away from a “headache expert” and come away with the feeling that it’s hopeless, that they just have to learn to live with their pain. And that’s a travesty.
Molly: Elizabeth, you just said that by you all putting yourselves in this position, you’re vulnerable, but it is really powerful for you to share your story in order to help others. So we really do thank you for that. We are thankful for this foundation as well. The Association of Migraine Disorders was there for the Shine Her Light celebration. Talk to me — just what it was like to see the community there celebrating, having so many people there to support and honor.
Diane: It was — it’s always amazing. We’ve done three of these now, and it’s always amazing, and what touches me the most are the migraine patients who come and thank us so much for getting their story out, for giving them a voice. And that’s one of the big parts of our event is the Share Your Voice section. They just feel validated, and that is a really important — most important part of it, I think, for me.
Dr. Henry: Because there is still such a stigma about this disease, and this stigma of “You look fine. And so why can’t you be doing your job? Why can’t you be in school? Why can’t you do this?” Because they see you on your good days, and they don’t see you when you’re curled up in a dark room.
Elizabeth: It was fantastic to have the executive director of the Association of Migraine Disorders with us. We were so — we were thrilled to have representatives from the Association of Migraine Disorders as well as the U.S. Pain Foundation that brought the INvisible Project. It’s such a wonderful feeling to feel all these organizations coming together now and working together to promote different campaigns. And I think that together we can be really powerful and we can make a big impact, and even just in the last three and a half years since starting this foundation, the entire community has grown so much. So there’s a lot of reason to have hope, and that event is — patients do. They get teary, and they get emotional, and they want to take pictures with him [laughter].
Diane: And the other thing I think that differentiates — it’s a party. We have a band and food and music, and it is a celebration of their lives and the very important part of our community.
Molly: Can’t wait for next year.
Molly: Many of us with migraine can really think back about the difficulties of navigating school. Can you all talk to me about your foundation and what you’re doing to help educate schools in how they deal with youth in schools?
Dr. Henry: Well, that’s one of our big topics this year that our foundation is going on, and we have a new advocate who’s joining our foundation and is going into the schools. In the past, it’s been more of a one-on-one, where if I deal with one patient in a school, I’m talking then with their counselors and administrators and saying there’s a — this isn’t the only child in your school, and we need these 504 accommodations.
We want to keep kids in school if we can. If we can prevent — a lot of times, a lot of schools will want to quickly get them into home and hospital, and at least they’re acknowledging it’s a disease and some individuals can’t go to school. But I think it’s really important, and I see in my patients, they feel much better. Even if they’re only in school for two or three hours a day two or three days a week, that still gives the social context and their friends and everything rather than being isolated and shut away at home with a tutor coming in one day or two days a week. Every time I have a child that I go through a school with, there’s always more, and the administrators and the teachers will oftentimes tell me there’s more. And so it’s a slow, slow project, but I think we’re gaining.
Elizabeth: And CHAMP now. We are a member of a community to develop a comprehensive plan for education in schools. So it’s very much still in process, but we’re excited to be a part of it, and we can offer what you’ve learned through your practice, so what’s been effective for your patients, and also members of our organization, what has helped them, what’s been effective for them. So I think with all the organizations coming together and developing a comprehensive plan, and then if we can have individual representatives going out to the community and speaking to the schools, speaking to the teachers, it will be very effective.
Diane: And I think if we can finally get migraine disease, headache disease, recognized as a disability, that will go a long way to accommodations both in school and workplace.
Molly: Very exciting to see your progress already and then the work that is on the horizon. I’d like to hear all of your thoughts on what people, families, and doctors can do to help loved ones dealing with migraine disease.
Elizabet: I think first and foremost, from what I’ve seen — it goes hand in hand with hope — is believing in someone, saying, “I believe you. I believe that you have all of these various symptoms and that you have headache disease. You may look fine on the outside, but in reality, you are fighting an invisible illness every single second, every minute of every day.” So if you can believe them and shore them up and provide them with accommodations if they need that or just support, that means the world to people.
Molly: I’m curious just on your thoughts, listening to your responses. Do you feel, over the course of the years that you have been telling your story and your migraine story, that people have become more understanding and more compassionate about migraine disease over the years?
Dr. Henry: We’re definitely gaining. There’s still people who don’t believe, and even within some families, but I find more people believing now than people who aren’t. And that’s why I encourage, like with Headache School, for the non-headache members of a family or a company to watch these videos to get an understanding of the disease. Education is powerful.
Diane: And I think sometimes education within the migraine patients themselves because so many times — I mean, you can’t go out into the public and start talking to people without having someone say, “Oh, I have bad headaches like that, and it’s not too bad because I only have two days a month that I’m really bedridden with it.” And I think, that is 1 out of 15 years of your life, and you just kind of accept it, and that shouldn’t be. There are treatments out there, and we need to make sure that there are more physicians that can provide those.
Molly: You’ve said keep hope. Let’s spread education. I’m wondering just what your thoughts are and what your hopes are for the future of migraine.
Dr. Henry: Well, my future is that all primary care doctors have the knowledge and ask the questions, and that is huge because if we can get to the questions early — and obviously my hope is for a cure of this disease because we don’t have a cure, but we have treatments. We have new medications that are going to be released almost for sure within the next six to nine months. They’re in whole new classes. So there is hope, and there’s always new things, so.
Diane: And the other area we really need to make a difference in is the insurance companies. There’s real resistance in the insurance companies to provide these treatments.
Dr. Henry: And there’s a big problem in the insurance companies right now with allowing you to treat with multiple preventatives at the same time, and yet you would never think of treating diabetes with one drug, or hypertension. Most hypertensives, most diabetics are on three or four drugs for their current problem, but migraine, we run into a block. If you want to do botulinum toxin, for instance, and you get a partial response, you can’t add a monoclonal antibody right now. Insurance just won’t cover it, and they need to. And so we need to be advocates for our patients and for our families, and we need to get employers advocating.
Elizabeth: My hope, I think, is that migraine is respected as the serious neurological disease that it is and the hope that no one is ashamed to say, “I have migraine,” because it’s not your fault and it’s not your lifestyle. It’s not anything that you’ve done. It’s a severe neurological disease. So my hope is that it becomes more respected, and educators and workplaces and people are more willing to respect it for the serious disease that it is.
Molly: Thank you all so much for sharing your time with us today. Is there anything else that you’d like to leave us with? Parting thoughts?
Dr. Henry: Keep being an advocate for your family members, for yourself, and if you don’t find someone who’s helping, keep looking. Try not to give up, because there’s a lot more out there now, and keep being a voice. One issue that I keep advocating to my patients is the ones who do get great relief — get 80, 90, 95% improvement — they need — now that they’re stronger, now they’re not fighting every day, it’s tough to be advocates for those who are. We need to be a force.
Molly: Well, thank you so much for joining us today, Dr. Dan Henry, Diane Henry, and Elizabeth Henry Weyher, with the Danielle Byron Henry Foundation. We really appreciate your time, and thank you for sharing your migraine story with us.
This podcast is sponsored in part by Amgen/Novartis and Alder BioPharmaceuticals.
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