In the rare disease community, more than diagnoses connect us

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by Halsey Blocher |

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(Note: This column contains spoilers for the movie “Five Feet Apart.”)

The 2019 movie “Five Feet Apart” focuses on a young couple, Stella and Will, who fall in love while receiving treatment for cystic fibrosis (CF). Their love is dangerous, though, because coming within 6 feet of others with CF can introduce them to new, fatal bacteria. The movie follows the unlikely pair and their budding hospital romance as they push boundaries, fight for their health, and explore the meaning of life.

I don’t have CF. I have SMA. On paper, they’re entirely different diseases, yet they have more in common than you might expect. Because of these similarities, I connected with the characters and stories of “Five Feet Apart” on a personal level that made it especially enjoyable — and at times, heartbreaking — to watch.

But why exactly would someone with a neuromuscular condition relate to a movie about people with a respiratory disease? I’m glad you asked.

Fun, laughter, and breathing treatments

Throughout the movie, Stella and Will spend a lot of time doing breathing treatments. We often see them inhaling steamy puffs of medicine from their nebulizer machines before turning to cough up the phlegm that’s been loosened. At other times, we see the characters strapped into their Vest Airway Clearance Systems, which are designed to shake yet more mucus from the lungs.

These therapies aren’t particularly glamorous, but they sure are familiar. I’ve been using both as part of my daily treatment regimen since early childhood. SMA is known to affect the voluntary muscles, including the ones that control the lungs. My lungs are severely affected by atrophy, which makes it difficult to breathe and cough and necessitates regular support from both of these machines as well as a tracheostomy, ventilator, and cough assist.

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An illustration of lungs is shown.

Previously unknown breathing abnormality seen in SMA type 2

Watching Stella do her treatments sometimes felt a bit like looking in a mirror. She was caring for her body in some of the same ways I do — with help from my family and caregivers — and she was also having fun with it. One of my favorite scenes shows Stella hanging upside down and laughing during a Vest treatment as she explains to her YouTube followers how the position makes the treatment more productive. I was laughing with her while marveling at the inclusion of a key component of my medical routine in a movie.

(Disclaimer: While I can confirm that postural drainage is beneficial, I’ve never tried using the Vest while upside down.)

The perspective of a CF expert

Breathing treatments and other medical care are just the tip of the iceberg here. There’s so much more from this movie that I relate to. But not wanting to accidentally misrepresent the film or the CF community, I decided to consult an expert for additional insights.

I asked my good friend and Cystic Fibrosis News Today columnist Brad Dell to share his thoughts on “Five Feet Apart” to see if parts of the movie spoke to both of us despite our different diagnoses. I shouldn’t have been surprised that Brad already wrote his own column about the movie, “The Scenes in ‘Five Feet Apart’ that Tore My Heart.”

Throughout his column, Brad discusses topics like relationships with family, friends, and healthcare professionals, reasons to continue pursuing treatment, and the devastation of losing a friend with the same condition. But perhaps the most poignant thing Brad said was from our texted conversation, in which he wrote this passage:

“The movie wasn’t always factually accurate but they nailed the emotional experience of yearning for empathetic camaraderie that’s just out of reach, of trying to make do with the life we’re handed yet wondering what it’s like to have ‘more,’ of needing to decide if we choose defiance by treating the disease with everything we’ve got or defiance by living as though we don’t have one.”

Celebrating community and connection

Although no two rare disease journeys are identical, we often find community with people who share our medical condition. We find comfort and companionship in knowing there are others like us. But connection can also transcend the boundaries of a specific diagnosis.

At BioNews, the parent company of this website, we share the stories of patients and caregivers living with many different rare diseases to promote education and awareness, but also to foster connection. Through both our shared and differing experiences, community takes root and blossoms.

This year, Rare Disease Day falls on Feb. 29. On this rarest of days, we celebrate a diverse, global community of rare people. Our conditions and genetics might be rare, but the connections we’ve built shouldn’t be. We can all pour from a heart of empathy and love to build bridges that span across our differences and unite us in the shared experience of humanity. And that’s something worth celebrating.

Note: SMA News Today 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 other 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 SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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