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Pausing for Rare Disease Day

Pausing for Rare Disease Day

For many families, the month of February builds to red hearts, chocolate, and romance. But for a unique group of people, the wintry days culminate on the 28th—Rare Disease Day. When one person deals with chronic illness, it affects the whole family.

After ten years of walking on unreliable and stiff legs, I understand the importance of pausing to recognize those who live with a fringe disease few understand. Just this week a neurologist said, “I have no idea why your legs don’t work. From my understanding of neuro pathways, I can’t even make sense of your gait.”

Stunned, I tried to absorb her words, but couldn’t. After all the tests, canes, walkers, and now AFO’s (ankle-foot orthotics), a well-respected doctor claimed she’d never seen anyone walk with my version of stiff, pigeon-toed strides.

For the first time in years, I wanted to hole up at home and not go out. I shed tears. Reached out to my sick-people Facebook groups. And am now trying to settle back into big picture mode where I accept that rare diseases, like mine, mean living in the underworld of the unknown.

It’s an interesting place. And thankfully, I’m not alone. I dwell down here with many wonderful families who exhibit unusual strength.

You may know some of them, but most likely, if your world isn’t affected by a rare disease, you may not. Fatigue, depression, and other overwhelming issues keep many of us safe in the comfort of our homes, where needed equipment awaits and the stares of the world don’t invade.

But if you do know a family—or maybe just know of a family—whose daily life is hampered by a medical term you can’t pronounce, take action in the coming weeks.

  • Stop by the clearance shelves and purchase a few choice items to give away. Knock on someone’s door or leave a gift bag in a mailbox. Either way, the small remembrance matters.
  • Leave your comfort zone and step into someone’s medical reality. Learn the lingo. Try to understand. Caregivers and patients alike need encouragement.
  • Make a small donation in a patient or family’s name to a charity or foundation that supports their illness. A quick Google search can lead the way. But most families who live with a rare disease are affiliated with a favorite organization. Just ask.

While walking with those who suffer demands time and a willingness to open ourselves to grief, the fertile, emotional path stretches and grows the soul. So, teach your children compassion by example and resist fear. Step out. You and your family will gain a perspective that makes living all the better.

By: Susan Schreer Davis lives with her husband, their cat named, Eggs, and the challenging effects of mitochondrial disease. She leans on humor, family, and faith the size of a mustard seed to maintain hope. Learn more about Susan, her latest book and many songs at

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