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I would have died without a double-lung transplant. Those words still send chills down my spine. It’s surreal that my story could have turned out differently. I try not to dwell on it, but sometimes my eyes sweat with emotion while reflecting on that truth: I was dying…

Note: This column describes the author’s own experiences with Orkambi, Trikafta, and Symdeko. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. In December 2019, I was working through my final year of a master’s degree in creative writing. Most…

When I hear a cough in public, my body tenses up and I immediately start scanning the room to see where it originated. (As a cystic fibrosis (CF) mom, I can usually find the source within seconds.) Then I try to make sure my daughter, Claire, who is 4…

As a person with a disability, I’ve been perceived as different and treated that way. This treatment has taken various forms during the seasons of my life, depending on when my disability was visible. I’ve been misunderstood, misrepresented, and mistreated in all kinds of arenas, and I want to set…

While scrolling through social media this morning, I learned that the rapper Fat Joe’s eldest son, Joey, is autistic. He wished his son a happy birthday and posted a nice message. The first comment I saw was from someone complaining that Fat Joe has never spoken…

So many things need to be done during the hustle and bustle of the holiday season. Gift lists need to be made, cookies need to be baked, decorations must be hung, and meals need to be planned, to name a few things. All of this can create added pressure, worry,…

A recent hospitalization for appendicitis reminded me too much of frequent hospital stays in the past. As memories infiltrated my thoughts, the traumatic ties to the past bubbled to the surface. It’s important to name and process our experiences since medical trauma compounds with chronic illness. Prior…

Most parents of children with rare diseases spend their lives trying to ensure that their child outlives them. That usually means taking part in fundraising to support the development of new treatments. But even if a child lives long enough to see a therapy come to fruition, this can…

Last week, I had to say goodbye to my best friend, my 11-year-old dog, Blaze. He had been battling a mast cell cancer tumor on his jaw. As pet owners know, making the decision for this final act of love is the hardest and most heartbreaking thing we have to…

We spend much of life transitioning between roles. Nothing is supposed to last forever, and the time you spend in one role is already preparing you for the next. Aware or not, I’ve been preparing to become an advocate, for myself and others, all of my life. As an adult…