Standing a statuesque 6 feet tall with a mane of blonde hair, Karen Ager, 46, has model looks. The native Australian, who now lives in New York City, has traveled the world, worked as a nanny to a rock star’s children and had brief flirtations with two prominent actors before becoming a teacher at the United Nations International School and marrying her adoring British husband.
Examined from this perspective, her life sounds glamorous, the kind most of us can only dream of. But read her recently published autobiography, Enemy Within (New Holland Publishers, 2010), and you realize that nothing could be further from the truth.
Karen has been fighting an aggressive form of rheumatoid arthritis, or RA, since her diagnosis at age 17 – though she had symptoms for some time before. She was wheelchair-bound for two years and at death’s door from pneumonia. At age 28, her right hip was replaced. She tried to tough out an abusive relationship; she felt no other man would want her because of her RA. And for years, she hid her disease from everyone except family and close friends.
“At times I felt hopeless. I lived in fear every single day that I wouldn’t be able to work, that I would never marry and that someone would discover my secret,” she says. “I’d lost control of my body. I was a twisted, angry skeleton.”
That was then. This is now.
Despite challenges that would floor even the strongest person, Karen has flourished, becoming a tireless advocate for people with RA.
Finding Her Voice
Karen’s decision to openly share her RA story was triggered by one pivotal event: In July 2001, with the supply of RA medications she brought with her from Australia nearly depleted, she saw a rheumatologist in New York City. She was prescribed a biologic drug that eased her symptoms within 24 hours – and an arthritis advocate was born.
“It was a virtual cure,” Karen says of the medicine. “I had a quality of life I’d never had before.” And she was stunned and angered to learn that, at the time, her fellow Aussies didn’t have access to biologics. “I had been robbed of my adolescence, my 20s and half of my 30s,” she recalls. “But suddenly the rest of my life seemed OK. For the first time I had hope, and I wanted to give that hope to others.”
When she went to Australia for vacation the following summer, she vowed to tell her story and “start a [public] conversation about biologics.” She called various media outlets until an editor at Time Australia Magazine agreed to interview her.
“At the time, arthritis got no publicity, so a two-page spread in a national magazine was pretty big,” she says. She also penned letters to the prime minister and other government officials, urging them to make biologics available.
I'm wondering if your advertisers have a play in this article. Biologics are VERY expensive, in the US, even for those that have insurance.
Please do not misprepresent the power of these powerful drugs. Sometimes it takes more than one try at different kinds to get to a point that means less inflammation and damage from RA. But, the 24 hour comment is a bit much.
Thanks Again!
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