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I’ve touched on this before but I am finding it honestly amazing how many people – from all aspects of live, and from all corners of the World – are finding my blog and getting in touch with me about it. Quite often I find out that these people are doing their own thing to try to raise awareness of, and help, rare diseases and Rare Disease Day.
Sometimes those very same angels have not only been doing it waaaay longer than me but also do it by writing about professionally.
This is one of those people.
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The Neurology of Angels: Every day a choice must be made between saving one child and treating thousands.
I have worked in industry and government and research, and there are two important things I’ve learned about health care systems. The first is that there is no evil mastermind; there are merely humans making hard decisions with the stories they have heard. The second is what Rare Disease Day supporters already know — that stories are built by the people with the loudest voices. So I wrote The Neurology of Angels to give rare diseases another voice in the dialogue.
I appreciate that Jay offered to share my story, and I wanted to take the opportunity to highlight something many people don’t understand about the uniqueness of rare diseases: that is, how the complexity and elusiveness of research and the long, costly process of developing a treatment can shape a person and her family as much as the disease itself. This experience is illustrated in the book when a clinical study becomes available and Sera’s response is not what her mother and her best friend expected. Excerpts are included below.
Thank you for supporting Rare Disease Day!
- Krista Tibbs (author – The Neurology of Angels)
Excerpts from The Neurology of Angels
Elizabeth told Sera, “There’s a doctor in Boston working with a company, and they’re looking for people with VWM to try a new treatment.” Sera didn’t say anything. “This is your decision. I’m not going to talk you into anything.”
Sera looked away, as if ashamed. “I want to do it, but I’m afraid.”
Elizabeth was confused. Sera had never been afraid of dying. What had changed, and where had she been while it happened? “Sweetie, you won’t be the first person to take the drug. A lot of people use something like it already to prevent strokes.”
“That’s not what scares me. What’s the worst that could happen; I’d get a terminal illness?” Sera smiled weakly and turned her eyes back to her mother. “I’m afraid that it’ll work.”
Elizabeth was stunned, at Sera’s words and at her own reaction. She felt a white flash of anger, hotter than she’d felt when her husband was taken from her, hotter than when Sera’s symptoms manifested despite Elizabeth’s belief in miracles. She’d been plenty angry at God in her life, but she wasn’t prepared for this fury toward her own daughter. She wanted to yell: What is wrong with you? Don’t you love me?
Tears formed in Sera’s eyes as she watched her mother’s speechless response. Elizabeth’s anger drowned under a swell of love and understanding. She hugged Sera tightly. “Fear of the future is the plight of us mere mortals.”
Lexi didn’t understand, either. Sera tried to explain. “When every day is a bonus, you notice each little bit of it. When I wake up and can feel my toes all warm in the blanket and wiggle them just by thinking about it, I know it’s going to be a good day. I’m happy just because I can zip my jeans, and tie my shoes, and paint my fingernails, and brush my teeth. Not just that I can squeeze the toothpaste and hold the toothbrush, but that I can feel the weird way the air gets cold afterwards…I want to fill every day with experiences. I want to dance or sing or play music or smile or twirl or just stretch. Because tomorrow I might not be able to tell my brain to do any of that…So I guess I’m afraid if I get better, I won’t notice any more how good it feels to stretch. You know?”
Lexi nodded slowly. Sera had spent her whole life as a sprinter, and now she might have to run a marathon.
Later, Sera told Lexi, “When I heard the drug was called Lexi-VM, I had to do it. Everything happens for a reason.”
“Okay,” Lexi said. “But don’t blame it on me if it works and you have to go to college and actually study for a change.” They laughed, sharing a future for the first time.
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The Neurology of Angels
Publ. Date: 2008
ISBN: 978-0-9818803-0-3 15ozs.
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If you are affected by a rare disease, or you know someone who is, please feel free to contact me if you would like to share your experience on here as that would be more than welcome!