Third in a series. Read parts one and two. In the following interview, I’ll explore how SMA impacts the way people perceive me, as well as share valuable advice for families with a loved one newly diagnosed with SMA. I interview my friend, Jakeb Klein, whose…
Refined By Fire — Ryan Berhar
Ryan is a simple man from Bend, Oregon. While he aspires to one day become a sit-down comedian, he has turned most of his attention to writing. He loves sharing his life experiences with people and bringing awareness to his disease. His two favorite things are sports and coffee.
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With Rare Disease Day coming up on Feb. 29, one question in particular has been circling the SMA community: “What makes you rare?” Anyone affected by a rare disease is entitled to their opinion. Likewise, everyone is uniquely qualified to comment on the concept of rarity. However, I struggle…
Second in a series. Read part one. This week, I sought advice from my aunt, Heidi McLaughlin, because she is a thoughtful, wise person. Like me, she is a writer. RB: If I didn’t have SMA and you could only give me one piece of advice about…
I go to my family and friends for advice before anyone else. They’ve always given me tremendous input, but how is that affected by SMA, if at all? In the following interview, the first in a series, I’ll explore how SMA impacts the way people perceive me, as well as…
As a kid with SMA, I had numerous ongoing hardships that caused me a great deal of stress. Most 7-year-olds don’t have to deal with the prospect of a spinal fusion surgery or with the idea that pneumonia soon could strike them again for the umpteenth time.
I try to be thankful every day, but at Thanksgiving, I try extra hard. A couple years ago, my grandma had our entire family write things we were thankful for on plastic pumpkins. While my cousins wrote what seemed like a paragraph on theirs, I simply wrote, “Ibuprofen,…
For a couple of years now, I’ve been working to achieve a positive wave of change in my life. My ultimate goals are to provide for myself financially and move into my own home. In other words, live more on my own terms rather than being hostage to everyone…
A couple times now I’ve touched on my surgery that didn’t happen at a hospital in Portland, Oregon. It’s an experience that was highly relevant to life with SMA and the therapy Spinraza, so it tends to jump to the forefront of my mind for column…
For most of my life, summer was my favorite season. I’ve never been a fan of school or frigid temperatures, both of which are absent during the summer. Once I graduated from high school, however, summer no longer held first place. Over the last few years, fall has…
For most of the year, I’m chilled to the bone. While most people are comfortable at 60 degrees Fahrenheit, exposure to such a temperature for half an hour results in loss of hand function until I warm up. That is a common issue for those in wheelchairs, as…
In the past two years, I’ve held seemingly every possible position on Spinraza (nusinersen). I went from elation in knowing that a treatment for SMA existed to being so fed up with the process that I never wanted to hear the word Spinraza again. The current situation is…
After I graduated high school, I had zero ideas of what I would do from there. The paths that young adults typically take were not workable for me. I couldn’t simply move into an apartment and get a job at Starbucks. I couldn’t go off to college,…
In my last column, “Meticulous or Ridiculous?”, I mentioned that I was traveling to Eugene for the Oregon football home opener. It’s a trip I’m used to because I’ve made it seven years in a row. What I didn’t mention was that I was also going to…
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