Writing About Rare Disease for a Living Is Rewarding

On April 1, I started full time at BioNews, the publisher of Muscular Dystrophy News Today, writing feature stories about the rare disease community. Since I first started writing articles in December 2019, my work has ranged from interviews with advocates, CEOs, and scientists to profiles on new organizations, and write-ups on various awareness events. 

As someone with Duchenne muscular dystrophy, writing about people who face issues similar to my own has been a rewarding, purposeful, and impactful experience. I’m able to help spread awareness for lesser-known diseases without breaking any ethical considerations as a journalist and build empathy for people who are in tougher positions than I am. 

The gravity of the journalism I am doing didn’t hit me until I was verbally thanked by a source for sharing their story. In extremely rare disease manifestations, such as boys being diagnosed with Rett syndrome, of which only 60 cases have been reported in the world, the patient has little opportunity to make their voice heard. My objective as a journalist is not to be an advocate, but simply to relay news, information, and personal stories that relate to our rare disease readers. From the perspective of a patient, caregiver, doctor, or family member, getting a chance to put their ultra-rare story out there makes all the difference.

The stories I write don’t necessarily have to be people-focused features. My long-form article on the economic burden of rare diseases — found to be at least $1 trillion by the EveryLife Foundation for Rare Diseases — can be equally as impactful. It’s an opportunity for advocates to effect change by using my work.

As a journalist, it’s important that I don’t take sides or editorialize in my writing (i.e., insert my own opinion). But even when actively being objective, changes can be made, especially when people see such a shocking number, as in the rare disease burden case. Words are powerful.  

I firmly believe that having a purpose behind what you do is extremely important not only in life but also in work, and writing about diseases, however rare they are, is something that benefits a group larger than myself. I’m fortunate in that way. I get to start my day working at a job that provides for me financially and contributes to the greater good.

Don’t get me wrong, plenty of jobs provide both, albeit in different fields. Being a chef, for example, allows you to express love through food. 

Writing about other people’s challenges, triumphs, and defeats helps put my own life in perspective. I recently interviewed a mother who lost her child to cystic fibrosis (CF). That is the ultimate tragedy, and I can’t imagine what it must have felt like. It also reminded me how fragile life is and how fortunate I am to still be here despite a condition like Duchenne. 

Additionally, many rare diseases, such as CF, multiple sclerosis, pulmonary fibrosis, and dementia, are invisible, meaning their symptoms aren’t apparent at first glance. I have a very visible disease because people can clearly see that I use a power wheelchair to get around.

Talking to a diverse group of people with very different diseases has taught me that everyone has their own challenges, whether they look like it or not. So, the next time I see an able-bodied person use a disabled person parking placard, I’ll think again before getting upset.

I had been on a track to do esports and video game journalism, and while I have not crossed that path out by any means, the type of work I produce at BioNews is extremely rewarding because it combines parts of my disability, life experience, and career path.

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Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.