Ankylose This! Living with Ankylosing Spondylitis

Monday, December 14, 2009

Andrew George

Andrew George, Liberal Democrat MP for St. Ives, was first elected to the British House of Commons in 1997. He's also had ankylosing spondylitis -- what he calls "a milder case," which, given his ability to work as a member of Parliament for the past 12 years, is self-evident -- since he was a teenager. He's been campaigning for broader access to anti-TNF drugs and is a member of the NASS's panel of experts. He also says he's one of three British MPs with AS (he's not about to disclose the identities of the other two).

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Wednesday, February 18, 2009

People with AS in the news

Thanks to etanercept (Enbrel), 45-year-old Andrew Hodgkinson, a Briton who has spent more than two decades with ankylosing spondylitis, trekked to the Mount Everest base camp last November: Birmingham Mail, Daily Mail.

In May, 37-year-old venture capitalist Vineet Buch will compete in the 2009 Molokai Challenge surfski race in Hawaii; Buch has had AS for 16 years.

British footballer Bryan Gunn, who continued to play for the Norwich City football club for years after being diagnosed with AS (see previous entry), has now been made manager of the club: Eastern Daily Press; Evening Star; Scotland on Sunday.

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Thursday, August 02, 2007

People with AS in the news

Boston Globe: Ellyn Robinson, a 42-year-old associate professor of exercise physiology who runs marathons and triathlons, is also a competitive weightlifter: she competes this month at the World Masters championship in Hungary. She was diagnosed with ankylosing spondylitis in 2000.

Willoughby News-Herald: 22-year-old Hilary Petersen of Mentor, Ohio ran a five-mile race only a year after being diagnosed with AS (see also).

Newham Recorder: Danny Branham, 49, is the latest persion with AS whose prognosis improved dramatically after being injected with TNF blockers to be featured by the British media.

Montgomery County Sentinel: Despite diagnoses of ankylosing spondylitis and sarcoidosis, Deserie Johnson, 36, still managed to put out a CD of beat poetry.

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Saturday, June 23, 2007

Bryan Gunn

A profile of Bryan Gunn, who, despite being diagnosed with ankylosing spondylitis at age 28, continued to play football/soccer for the Norwich City Football Club until he was 35.

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Tuesday, May 22, 2007

Left field for the Corsicana Tigers

The Daily Sun of Corsicana, Texas profiles a local baseball player with ankylosing spondylitis: Aaron Bland plays left field for the Corsicana Tigers.

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Friday, May 18, 2007

When rest makes pain worse

In its profile of ankylosing spondylitis, and of a local patient, Gino Brancolino, the Melbourne Herald Sun focuses on the counterintuitive nature of the disease. Quoting a rheumatologist, Lionel Schachna:

"Most people present with what we call inflammatory back pain, which is different to the common type of back pain people get," Dr Schachna said.

"Inflammatory back pain is better with activity and worse with rest, as opposed to mechanical back pain which is better with rest and worse with activity.

"People will often experience pain early in the morning because they have been resting in bed in one position.

"Often people do wake up in the early hours of the morning, say 3am or 4am, with pain and stiffness and have to get out of bed to stretch or have a shower in order to gain some relief and get back to sleep."

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Wednesday, May 02, 2007

Florida sisters with AS

An article in -- so help me -- the Florida Baptist Witness looks at how two sisters, aged 12 and 16, cope with ankylosing spondylitis. The article focuses more on their family's faith than on the sisters' treatment -- other than Tiger Balm, ice and prayer, there's no mention of it -- but despite the fact that they're people of faith and I'm not, the article rings true for me when it deals with the older sister's frustrations:

"So many people just can't understand how I could look fine and be sick, because I don't look sick," the teen said. "You know, so many people think if they were in my position, they could live my life better than I can. And that's one thing that really gets me."

Sometimes overwhelmed by well-meaning friends who want the girls to look at alternative medicine or the latest diet related to the illness, Stephanie said people get offended if the family doesn't choose to respond.

Stephanie apparently has a MySpace blog, but I haven't been able to find it.

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Friday, March 16, 2007

Climbing Mount Kilimanjaro

Matthew Leibowitz, an Australian lawyer with ankylosing spondylitis, is part of a team that will climb Mount Kilimanjaro to raise funds for Arthritis Australia; this article from a chain of Australian community newspapers has more.

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Sunday, March 11, 2007

Jeff Woods, personal trainer

In the course of reporting on a local fundraiser for the Arthritis Society, Edmonton Journal columnist Nick Lees gives us the story of personal trainer Jeff Woods, who, despite his AS, is described as "incredibly fit" -- he apparently competes in sprints. The fundraiser is a ballet, and apparently Lees is donning a tutu for a brief scene.

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Friday, February 02, 2007

'Please, don't call me homeless'

Worn down by depression and ankylosing spondylitis, by 1997 Norman Carroll found himself living on the streets of Palo Alto, California. Down, but not out, he began fighting for the place of the homeless -- or as he prefers, "unhoused" -- in society, and challenging people's preconceptions of what it meant to be on the street. Last year, Norman's lottery number came up: he now lives on a housing voucher in a studio apartment, surrounded by the affluence of Silicon Valley. The San Jose Mercury News has the story of this unique individual.

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Tuesday, January 23, 2007

Playing in pain, part 7

Another profile of a high school athlete struggling with ankylosing spondylitis: this time it's Hermiston, Oregon basketball player Krieg Mueller, who was diagnosed a year and a half ago and who isn't responding to treatment. (The article doesn't specify which treatment; curiously, it gives his parents' phone number if anyone has any advice -- I imagine they will shortly be inundated with every quack treatment out there, from herbal remedies to the no-starch diet, when he probably simply needs to try a different NSAID or biologic.)

I've been keeping track of news stories that turn young athletes struggling with AS into sources of inspiration for the healthy. Previous entries: 1, 2, 3, 4, 5, 6.


Thursday, January 04, 2007

Antonio de Figueiredo (1929-2006)

Last month the Guardian ran an obituary of Antonio de Figueiredo, a journalist and activist who campaigned for the liberation of Portugal's African colonies in the 1960s and 1970s -- and who also suffered from ankylosing spondylitis:

Disabled as a young man by ankylosing spondylitis, a rare and incurable disease of the spine, de Figueiredo was an unmistakable figure, whose intensity of stare gained extra authority as it emanated from a stooping figure and upturned face. But he never took himself too seriously, lapsing into jokes and anecdotes, often at his own expense. His physical courage was as remarkable as his passionate determination to effect change.