Refined By Fire – a Column by Ryan Berhar

Rare Disease Day

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.

Tips to Stay Warm When Temperatures Drop

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…

Deciding to Hold Off on Spinraza, for Now

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.

Lost? Find a Mentor

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.

Event Planning: Meticulous or Ridiculous?

I’m not exaggerating when I say that SMA requires you to plan ahead for everything. If I don’t carefully coordinate each day with my caregivers, I can’t even go to the bathroom. Fortunately, I usually can plan for a daily occurrence like that, but…

I Was a Victim of Comfort

It’s difficult to fit in when you have SMA because you are one of a kind. The reality is I’m never going to fit in perfectly anywhere, but I haven’t done myself any favors for most of my life, either. In my younger years, I didn’t…

Walk with Me for a Day (Pun Intended)

Time to get up My day begins like this: I wake up and call my caregiver (these days, it’s usually my grandmother or my friend, Sam), who turns off and disconnects my machines. I have a breathing machine called a BiPAP, a feeding…

Is That Paint or Legos?

Engaging in normal conversations is difficult while in a wheelchair. If people stop staring long enough to say anything at all, it likely will be related to my disability. My appearance evokes a variety of questions ranging from ignorant and annoying to genuine and…

Coming to Terms with My Spinraza Setbacks

My Spinraza journey has been a roller coaster ride so far, filled with joyous highs and gut-wrenching lows. I am a person who likes to make a decision and stand (or sit) by it. But with Spinraza (nusinersen), I have found it impossible to…