Your Rare Disease Reading List for Quarantine: Part 1

Your Rare Disease Reading List for Quarantine: Part 1
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First in a two-part series.

With August around the bend, a summer reading list may seem a little last-minute. But if like much of the world, you’re still spending more time at home than usual, consider adding some of these titles to your shelf. From diagnostic odysseys to stories of human courage, they’re as entertaining as they are educational. And if you’re a rare disease patient or advocate, they’ll make you feel proud to be part of such a brave community.

This post includes just the first half of the list, all but assuring enough inspiring reads for the rest of 2020. Sprint through one of these books in time to check back next week for the rest of my picks.

1. “Behind These Hands,” by Linda Vigen Phillips

I loved the author’s first novel-in-verse, “Crazy.” But “Behind These Hands” hit close to home because my late sister, Taylor King, lost her life to Batten disease, the same condition that afflicts protagonist Claire Fairchild’s younger brothers. It isn’t easy to convey a world shattered by this terrible disease, and I should know — I wrote a memoir about my own experience as a healthy sibling. Though I was 10 years older than the fictional Claire when my sister was diagnosed in 2006, I see much of myself in Phillips’ main character. Everyone worries about the effect of an illness like Batten disease on the patient and parents, but it’s easy to forget how a crushing diagnosis affects brothers and sisters.

In “Behind These Hands,” Phillips tackles a difficult subject with skill and grace, while also artfully incorporating the complex relationship dynamics that define the teen years for so many of us. This is a must-read for anyone who has ever faced the prospect of losing someone they love or had to reconcile their own personal dreams with the needs of their family.

2. “Brain on Fire: My Month of Madness,” by Susannah Cahalan

I heard Cahalan speak at the 2019 Global Genes Rare Patient Advocacy Summit in California, where I was also a speaker. Her memoir, “Brain on Fire,” is a riveting account of the fight to rediscover her identity after a harrowing, mysterious illness.

3. “Chasing My Cure: A Doctor’s Race to Turn Hope into Action,” by Dr. David Fajgenbaum

My mother, Taylor’s Tale President Sharon King, pegged Dr. David Fajgenbaum as a rising star years before he became a bestselling author and a hero in the medical world — first for his work on Castleman disease, and in 2020, for taking a similar approach to the COVID-19 pandemic. Fajgenbaum was the keynote speaker when Taylor’s Tale celebrated its 10th anniversary in 2017, and three years later, his story still leaves me speechless. “Chasing My Cure” chronicles the former Georgetown quarterback’s incredible response to a baffling condition after he suffered organ failure and was read his last rites.

4. “Run to the Light,” by Laura King Edwards

Run to the Light” won’t be the last book I ever write, but it may be the most important. Published in 2018, it’s a 260-page love letter to my late sister, Taylor, who taught me everything I know about courage. After receiving a death sentence at age 7, Taylor, who was born with CLN1 disease, a form of Batten disease, completed 5K races blind, learned Braille, starred in school talent shows, and rode horses. Instead of caving to her condition, she faced it head-on — winning nearly every battle except the last one.

I always thought I’d get to watch my baby sister grow up. Instead, I had to watch her die weeks after her 20th birthday. But “Run to the Light” is not a sad story — instead, the book is a moving account of unconditional love, how I found the strength to face indescribable loss, and what it means to really believe.

5. “Shifting into High Gear,” by Kyle Bryant

Author Kyle Bryant makes up half of the popular podcast “Two Disabled Dudes: Life Beyond Circumstances.” Like the podcast, Bryant’s book, “Shifting into High Gear,” examines the meaning of living beyond our circumstances, no matter what those may be.

Bryant suffers from a rare disease called Friedreich’s ataxia. The condition affects his balance and coordination, greatly limiting his physical abilities. Yet this hasn’t stopped him from completing several long-distance bike rides, including many across the U.S., chronicled in the award-winning documentary “The Ataxian.” His amazing story can teach all of us something about embracing even our most difficult challenges.

Next week: A journey through the animal kingdom, a mother’s grief, and more. Have you read any of the books on today’s list? Please share in the comments below.

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Note: Batten Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Batten Disease News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Batten disease.

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