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How fragile we are
By Nancy Baye

It’s embarrassing to admit, but up until a few months ago, I didn’t know what dysautonomia was. Its name might be a tongue-twister, but it’s a life-twister, a devastating disease that is under-recognized.

Essentially, dysautonomia is a group of medical conditions caused by issues with the autonomic nervous system, which controls involuntary body functions like breathing, heart rate and blood pressure, digestion and temperature regulation. Ramifications of dysautonomia include cognitive issues, extreme fatigue, sleep disruption, body pain, tachycardia, dizziness, fainting spells and more.

Accessible Journeys’ Marina Apperley contributes whole-heartedly to each issue, and we are grateful to her for serving as guest editor on this edition. Marina pulls back the curtain on dysautonomia, sharing her experiences and tips, and securing content from other thought leaders in the field. Thank you, Marina, for steering us through another eye-opening journey of life and travel through this unique lens.

Journalist Summer Dashe’s article informs us that her version of dysautonomia—POTS is a disease that happens to otherwise healthy people and is often triggered by a virus (COVID-19, the flu) or physical trauma (an accident, a surgery). It’s a reminder of how fragile we all are.

Sadly, dysautonomia and its related conditions remain widely misunderstood, especially by the medical profession. Ilana Jacqueline reminds patients to beware medical gaslighting, to remain strong when confronted by doctors who dismiss or disregard health concerns. She reminds us to self-advocate, and actively speak up to improve the culture of healthcare, saying, “We do have rights, so knowing, using and protecting them has to be a conscious practice.”

Faith Littlejohn shares her vision of people with dysautonomia as warriors because she knows it’s a battle—one that begins with grieving the life the warrior knew before, to move on to a new normal.

Dysautonomia’s range of conditions create invisible disabilities, and as such, their tribes face unique stigmas. We are thankful to the wonderful contributors willing to speak up on what this means to them, and what the rest of us need to know. Together, we can work past judgment and shame.

Christine E. Staple Ebanks and regular columnist Jennifer Allen, lend sage advice on transportation and travel for parents with special needs children. And, as always, we share tales of inspiration, like that of Craig DeMartino who fell the equivalent of a 10-story building during a rock-climbing expedition. He went on to endure rehab, choose amputation and—no surprise—return to a career of rock climbing! Along with our bloggers, vloggers and Instagrammers, all reporting from the front lines, we have enough resources and inspiration to fill ten magazines.

And as always, we bring it all back to our favorite topic—travel. Most of this issue’s writers agree that dysautonomia makes travel more difficult and that adaptations are needed. But they also agree that travel remains key, refreshing mind and soul, making life richer. That’s why Accessible Journeys is here—to ensure that everyone can travel without limits.

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