Betty and her husband are health advocates. When their daughter was diagnosed with JIA (Juvenile Idiopathic Arthritis) at the age of three, it was the beginning of a long, ongoing journey.
JIA affects over 300,000 children in the U.S., more than all juvenile diseases combined (including juvenile diabetes). Raising awareness of this chronic illness has been a constant thread in their parenting roles. As a family they have participated in more than a dozen JIA National and local Conferences, advocated and met with politicians at the state and federal levels, raised tens of thousands of dollars through the Jingle Bell Run and the Walk for Arthritis, with the hope of finding a cure.
Betty is a three-time cancer survivor. She has learned that sometimes you have to push to get doctors to approve a test that could save your life. Sometimes you have to ask for and to accept help. Sometimes there are rays of enlightenment that brighten the dark days. And she writes about it.
Juvenile arthritis (JA) affects nearly 300,000 children in the U.S. From symptoms to treatment, here’s everything parents need to know, including how my family found support while raising a child with JA.
By Elizabeth Reed
February 23, 2021
CREDIT: GETTY IMAGES
For nineteen years I took our daughter Annierose to Boston Children’s Hospital for joint taps, fever spikes, bleeding ulcers, alarmingly high liver enzymes, MRSA, and staph infections. Why? Because she has juvenile arthritis. Read more
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A Rheumatologist and a Rose
By Elizabeth Reed
November 22, 2019
The weighty rose bush I carry impedes my vision, but I can see enough to walk from the Boston Children’s Hospital garage to the sixth floor of the Fegan Building. I could have driven here blindfolded, so often have we been here. Nineteen years ago, our daughter was diagnosed with Juvenile Idiopathic Arthritis. My husband and I had never heard of the disease, even though JIA affects over three hundred thousand children—more than juvenile diabetes, more than all juvenile autoimmune diseases combined. Through the anxiety of dispensing toxic medications, inflicting weekly injections and seeing our daughter in pain, her pediatric rheumatologist saved our sanity. Read more
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BY ELIZABETH REED
It’s domestic duty day: food shopping, dry cleaners, returning overdue books. I make my one daily cup of coffee, then suck on a square of dark German chocolate, letting it melt on my tongue during slow slurps while I collect the mail from our front entrance. There’s a birthday card for my daughter, Annierose. Birthday. Shoot. My sister’s birthday was yesterday. I look up her work number.
“Hi Christine! Happy belated birthday! Did you do anything special yesterday?”
“Well,” Christine says quietly, “Actually, it was kind of a drag. Can you hold on a second?”
“Sure.” As I start to unload the dishwasher I hear the muted sound of her office door closing. When Christine wants privacy at work, I know something is wrong. My abs do an involuntary crunch.
“I had an ultrasound done on my right breast.”
My hand, holding a dinner plate, goes limp. I know what having an ultrasound means. They’re looking for something. Read more
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