Family of three fights to bring awareness and understanding to a common disease
May 08, 2017 10h23
By Natalie Mollinet
Danielle Henry passed away at the age of 17 from migraine disease. (Henry Family)
By Natalie Mollinet | [email protected]
One of the most common diseases in the world is actually one of the least well known in the world—it’s called migraine disease, and it affects 38 million people worldwide. The Henry family living in and around Sugar House, started a foundation called the Danielle Byron Henry MigraineFoundation to increase public awareness of migraine disease and headache disorder, and the impact on patients, their families and society.
“The most difficult part of migraine disease is that it is largely unseen and misunderstood,” said Dan Henry, a doctor who specializes in headache and migraine disorders. “There are more who have migraine disorder than asthma and diabetes combined, and it’s really unknown because people don’t see it every day.”
Henry works at the Foothill Family Clinic in Salt Lake City, but changed his family practice once one of his family members who suffered from the disease passed away. Since then he and his family have dedicated themselves to spreading knowledge and understanding about the disease, starting with their foundation.
The Danielle Byron Henry Migraine Foundation tarted in March of last year after the Henry family lost a daughter and a sister to migraine disease. Danielle Henry, who the foundation is named after, passed from migraine disease in 1999, a battle she fought from an early age. At the time, little was known about the disease and the most the family could do was give Danielle a shot to help calm the migraines. Danielle attended J.E Cosgriff Memorial Catholic School in Sugar House and then went onto Judge Memorial Catholic High School.
“She did miss a lot of school, but despite that she was an honor student, and a varsity athlete,” Elizabeth Weyher, Danielle’s sister, said. “Danielle played varsity tennis, softball and basketball.”
Weyher said that Danielle was lucky to be at a good school that understood her needs. Her basketball coach and teacher had a place in her classroom where she could rest if the migraines got too bad, and learned how to help her with the injections she needed.
“Having that there for her was great,” Weyher said, “when she’d get her migraines, she sometimes couldn’t see so she couldn’t drive, and there were times where she couldn’t remember her phone number.”
Danielle was hospitalized at least twice due to the disease. Her parents exhausted all their resources in Utah and finally went around the country meeting with specialists and trying to find different treatments.
“When she got the disease, all my free time went to finding answers for her disease,” Henry said. “When it’s your child, you want to find answers. I wasn’t planning on becoming a headache expert but over the years, I became one.”
After her 10-year battle with migraine disease, Danielle had a stroke, which the disease caused, and passed away at the age of 17. Even after her death, her father still pushed to learn more, and educate doctors on the disease so that they could learn to better diagnose patients who came into their clinics.
“I think the primary problem is the lack of awareness,” Weyher said. “Everyone knows about diabetes and asthma, and if you say migraine, people think of it as a headache, when in all seriousness it’s a neurological disease. My sister used to say, ‘I wish I had a brain tumor, because then someone would understand.’”
Henry said that most doctors don’t know how to diagnose the disease or treat it. During a medical student’s time in school, they will only have two, one-hour lectures on headaches, so it’s not surprising that doctors know so little on the disease and disorder.
Through the foundation, the family has been able to start a Headache School at the University of Utah in Research Park. They bring together speakers who know different aspects about headaches and educate not only families who are affected by the disease but medical students and doctors who want to learn more.
“After she passed, we decided that I would spend the rest of my career just taking care of headache patients,” Henry said. “I thought if I could help one person and then help the next person and the next person, I could relieve some of the suffering.”
The foundation not only started the Headache School at the university, but provides a free support group for adolescents who live with the disease. The group meets the first and third Tuesday of every month from 7:30-8:30 p.m. at the Foothill Family Clinic at 6360 S. 3000 East. The family started this after learning that there weren’t any support groups in the nation for those with migraine disease and headache disorder.
According to studies, migraine is the 6th most disabling illness in the world. More than 90% of those suffering from the disease are unable to work or function normally during their migraine. Henry has had patients who have a hard time keeping jobs and a social life because their headaches keep them away from living a normal life. Because so many different things can trigger a migraine such as computers, missed meals, lights and weather, one of his young patients said, “life is what triggers my migraines.”
The family is holding a public fundraiser called “Shine Her Light” on June 16 at the Gallivan Center in Salt Lake City. The fundraiser starts at 6 p.m., and will feature music by Disgusting Brothers Band, and dinner will be provided by Black Sliders, Fiore Pizza, La Rancherita, Saturday’s Waffle and Sweetaly Gelato. All the proceeds will go towards the foundation which goes towards headache disorder and migraine disease research and funds the different programs organized by the family.
“Ultimately, before I die, I hope we actually have a comprehensive headache program here in the state of Utah, whether it’s at IHC or the university,” Henry said. “If we can start as a community and develop these programs for support and awareness, then it could be a model around the country.”
Learn more about the group session and the disease or donate to the foundation at daniellefoundation.org.