November 28th, 2009 by Dr. Val Jones in Expert Interviews, Opinion
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Laurie Edwards has a rare chronic disease called primary ciliary dyskinesia. Her symptoms are quite similar to those associated with cystic fibrosis, and her young life has been punctuated by numerous hospitalizations, physical limitations and the occasional near-death experience. She is a remarkably upbeat woman, and attributes her self confidence and optimistic outlook to her loving friends and family.
Laurie is part of the patient blogging community online. She reads physician blogs with interest, and wants to protect others like her from snake oil and misinformation. She recently interviewed me about my pro-science views for a new book that she’s writing. People like Laurie play a critical role in accurate health communication, and I welcome the chance to discuss science-based medicine with them. Here are some excerpts from our chat: Read more »
*This blog post was originally published at Science-Based Medicine*
January 24th, 2009 by Dr. Val Jones in Book Reviews
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Laurie Edwards has an extremely rare disorder called primary ciliary dyskinesia (PCD). The condition causes similar signs and symptoms to cystic fibrosis (CF), including chronic lung infections and difficulty breathing. In her recent book, Life Disrupted: Getting Real About Chronic Illness In Your Twenties And Thirties, Laurie invites readers to experience her life as a chronically ill young woman. She spares no gory details:
I had to wear the probe for forty-eight hours to see if irregularities in my GI tract were contributing to my breathing problems. It was an awkward contraption, and just as I finished speaking, I sneezed. Because of the tubes, I couldn’t control it well and a bloody mess spewed out of my nose and onto my shirt. I looked down at the mess and up at John.
‘Sexy, huh?’ I asked, completely mortified.
But beyond the raw realities of her illness (including the regular disruption in her education, her unfulfilled longings to “fit in,” and her lack of control of her circumstances), is the amazing story of the people who love her. Life Disrupted‘s ironic subtext is the unshakable support of her family and friends.
From her earliest first moments at home, Laurie’s brother “spent hours standing guard at her bassinet, as if to reassure her mother nothing would happen to her.” As she grew older, her brother continued his protective commitment, promising to always be ready to help her in any time of need. Laurie’s parents had a strong and loving marriage, and their patience and kindness were a constant source of security and comfort.
Laurie’s husband shows incredible stoicism and endurance – undeterred by her diagnosis (which she revealed to him unwittingly on their first date), he learns how to give her chest physical therapy by week three of their relationship, and remains calm during a dangerous near-suffocation episode.
He was perfect. He did not get flustered, did not panic, just got me home as quickly as possible, unlocked my door, and ran to set up the nebulizer. He clapped me while I positioned myself with the nebulizer mask and tubing, trying to manually break up the thick mucus that cut off my air supply.
My favorite part of Life Disrupted is its humor. Laurie does an admirable job of capturing the amusing banter that she and her friends used to lighten the mood:
My friends and I refer to my nebulizer and oxygen face mask in the hospital as the “Super Bong.”
And my favorite sentence of the book is this one:
It was a container of honey mustard salad dressing that turned out to be my Waterloo, the moment of my crushing, flabbergasting defeat.
Laurie’s life – disrupted by chronic illness – is charming, vibrant, and rich in affection. The disruption itself is perhaps diminished by the connectedness of her family and friends – a healthy emotional backdrop to the physical illness at center stage. In the end, Life Disrupted offers compelling evidence that love really can conquer all.
