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A wake-up call from a young e-patient: "I need to be heard"

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often chronic diseases share their unique stories. Our latest comes from 15-year-old Morgan Gleason, who lives with the autoimmune disease juvenile dermatomyositis. 

Before June 18, 2010, the day I was diagnosed, I knew the medical system the way that most kids do. I went to the doctor for immunizations, physicals, sore throats and bones that might be broken. Then, I developed a rash on my joints. I started sleeping more than normal, was very weak in my muscles, and experienced frequent stomachaches and headaches.

At the age of 11, after a year of these symptoms, I was diagnosed with a rare autoimmune disease called juvenile dermatomyositis. I suddenly was in a whole new medical system. I had to learn to swallow pills, wait for hours in doctors offices, spend nights in the hospital, worry about what was happening, deal with some not-so-nice doctors and nurses, and endure a lot of pain. I also watched my parents get frustrated with figuring out medical bills and trying to understand all of the claim statements and appeal denials.

Now I take 21 pills a day, get two infusions a month by an IV, and give myself an injection once a week. I have more specialists than my grandparents, and I spend a lot of time as a patient.

This January, I was hospitalized for the second time in four months for meningitis due to a reaction from a treatment I received. After four days of little sleep and an excruciating headache, I made a video about my hospital experience and posted it online. To my surprise, the video got a lot of attention. Forbes, Time, the Huffington Post and other outlets wrote about it. I believe that the video was popular because my experience was a common one and struck a nerve with others.

I am appreciative of the care I have been given. I love the hospital where I get my treatment, and I think it's a great hospital. The medical students, residents, attending physicians, and specialists are great doctors. The nurses are also really great. This is not an issue with the individual people or hospitals. The issue is much bigger, and it's the way the system as a whole is designed.

My video had a few main points. I was frustrated that I couldn’t get any rest in the hospital. The system is designed around the schedules of the doctors and the desire to discharge patients by noon instead of around the circumstances and needs of the patient. Second, the doctors come in individually instead of coming together and addressing all the concerns at one time. Third, when patients are awoken from deep sleep, they're not going to be as engaged as they would be when they are alert and comfortable. Finally, patients, and even children and teenagers, appreciate having the doctor talk with them instead of having the doctors talk over them or away from them in the hallway.

I've been amazed by the hundreds of people who have e-mailed, commented on posts, direct-messaged me, and blogged about my video. I've been amazed at how many people have shared similar stories about how they didn’t get any sleep in the hospital or how they didn’t feel their doctor listened to them or really tried to understand. Many patients are fed up with the system being so difficult to use. I don’t think many people in the health-care system fully realize that most people needing medical care are already weak, not feeling well, frustrated, and scared.

The line in my video that people really seem to like is “I am the patient and I need to be heard.” The system really should be built around the patient’s needs, goals, convenience, and affordability.

I believe engaged patients get better care. I have learned to be prepared when the doctors come in, to write down symptoms, and to be ready with questions or concerns. As I move from being a teenager to an adult over the next few years, I plan to be a very engaged patient. I know that I'm my best advocate because I know my body the best. I have also learned that other patients often have great experiences to learn from, especially when it is a rare disease.

I've been inspired by the response to continue speaking out. I've been asked to be part of patient panels, to write articles, to be on podcasts and radio shows, and to speak at conferences. I hope that I can make a difference by giving a voice to patients everywhere.

Morgan Gleason, a 15-year-old sophomore in high school, lives in Florida. She loves horses and rides as often as possible. She plans to pursue a career in healthcare, and she recently participated in a Stanford Medicine X panel on rare disease. See more at http://morgangleason.com, and follow her on Twitter at @Morgan_Gleason.

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