Ankylose This! Living with Ankylosing Spondylitis

Wednesday, February 03, 2010

A technical note

With Blogger's upcoming discontinuation of FTP publishing, I have to re-engineer Ankylose This! somewhat -- either by moving it to a subdomain or by switching it to another blogging engine, like WordPress. At the moment I'm leaning toward switching to WordPress.

Whatever I do, I'll try to minimize any disruptions -- for example, ensuring that old links are forwarded to the new pages.


Tuesday, January 12, 2010

Facebook redux

It seems to have happened quite suddenly. The ankylosing spondylitis group on Facebook grew to nearly 1,600 members while my back was turned (which is interesting when you consider I'm the group admin; I started it nearly two years ago). A lot of new discussions have been started; it's never been so lively.


Two new AS genes identified

Researchers have identified two new genes associated with ankylosing spondylitis. From the press release: "Based on work from a genome-wide association scan, the team identified genes ANTXR2 and IL1R2 as well as two gene deserts, segments of DNA between genes on chromosomes 2 and 21 that are associated with ankylosing spondylitis. Importantly, the study also confirmed the Triple 'A' Australo-Anglo-American Spondylitis Consortium's previously reported associations of genes IL23R and ERAP1, formerly known as ARTS1."

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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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Monday, November 30, 2009

Ankylosing spondylitis and work

The National Ankylosing Spondylitis Society conducted a survey of 324 of their members in August and September 2009. More than half of the respondents (54 percent) with severe AS identified their workplace as the part of their lives most affected by their disease. About a third (38 percent) said that they'd received advice on coping with work from either a health care professional or their employer, and around half said that their doctor had never discussed work issues with them. Press release.

I'm both nodding in recognition and disturbed by these results. I could say quite a bit about how AS has affected my own career prospects and my ability to work full or even part time. I was under the impression that much of the treatment we undergo was aimed in large part at getting us to stay in or return to the workplace (or, to put it another way: without treatment we would be unable to work). Does it say something about the quality and effectiveness of our treatment if so many of us are reporting work issues? If nothing else, managing workplace issues may be a missing link in the total care package.

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Tuesday, October 06, 2009

Medical News Today on uveitis

Medical News Today has an article today on uveitis, one of the more commonly encountered peripheral symptom of ankylosing spondylitis (and, fortunately for me, one I haven't experienced yet).


Friday, September 18, 2009

SAA training video for emergency first responders

Those of us with ankylosing spondylitis dread getting into an accident: our spines are more fragile and less flexible, and we're at greater risk of spinal fracture or spinal cord injury. To that end, the Spondylitis Association of America has put together a training video for emergency first responders setting out the special needs of patients with ankylosing spondylitis. Press release.

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AS forum in Victoria, B.C.

An ankylosing spondylitis forum hosted by the Arthritis Society is taking place in Victoria, British Columbia on Thursday, October 1, between 2:00 and 4:30 p.m., at the Victoria Arthritis Centre on 2680 Richmond Road (map). Event listings here (scroll down) and here. Free to attend, but you must register in advance.

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Saturday, September 05, 2009

The NHS on ankylosing spondylitis

England's National Heath Service has a multi-page guide to ankylosing spondylitis; it's now permanently linked on the sidebar, under "About AS." Meanwhile, BryanUK is one of seven arthritis bloggers on the NHS website: his first posts talk about his diagnosis and pre-TNF treatment, his first week on Humira (I didn't know you had to avoid certain foods!) and family support.

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Friday, August 21, 2009

Man with Ankylosing Spondylitis on Bill Moyers' Journal

This evening's episode of Bill Moyer's Journal featured several Americans struggling with serious health conditions for which they couldn't get adequate treatment because they lacked health insurance. One of them, Carlos Benitez, had been struggling for years with back pain that he was trying to treat with over the counter pain meds. The medications were causing bleeding into the stomach, and his blood loss was so great that he had to be hospitalized and transfused. He was hunched over, had limited neck mobility and had lost seven inches in height. Of course, the minute I saw him, I recognized that he had ankylosing spondylitis, and the diagnosis was confirmed by the doctors that he was able to see as a result of his participation in the documentary.

What surprised me was that the doctors immediately started talking about surgery. he could still drive, and he had some neck mobility. After exploring surgery options in Mexico, he was able to get spinal surgery for free as a result of the documentary. The physicians were able to restore four inches of his height, and he was pain-free several months later.

The structure of the documentary didn't allow them to go into a lot of detail about life with AS. I worry that it left the impression that surgery is a cure. But it was interesting to finally see someone talking about AS on national TV.

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Thursday, August 20, 2009

Health Canada on TNF blockers and cancer in children

Further to this earlier post, Health Canada has issued a safety update on TNF blockers and cancer in children and young adults. (Disclaimer: I work for Health Canada, but only in the correspondence unit.)

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Wednesday, August 19, 2009

Chinese herb better than sulfasalazine

A new study suggests that extracts from a Chinese medicinal plant, Tripterygium wilfordii, may be more effective in treating the symptoms of rheumatoid arthritis than sulfasalazine. While sulfasalazine may not be the first drug that comes to mind for inflammatory arthritis, I was on it for a while myself (when I was trying a few different treatments). Since the treatments for RA are usually directly applicable to ankylosing spondylitis, this may well have some implications for how our disease is treated down the road. The analogy that comes to mind is willow bark and acetylsalicylic acid (Aspirin).

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Saturday, August 15, 2009

New SAA Website

The Spondylitis Association of America announced this week that they've redesigned their website. Not bad.


Friday, August 07, 2009

FDA links TNF blockers to cancer in children

The U.S. Food and Drug Administration is requiring that TNF blockers have a warning added to their labels indicating an increased risk of cancer in children. "An analysis of U.S. reports of cancer in children and adolescents treated with TNF blockers showed an increased risk of cancer, occurring after 30 months of treatment on average. About half of the cancers were lymphomas, a type of cancer involving cells of the immune system. Some of the reported cancers were fatal." More information from Newsday, the Wall Street Journal and WebMD.

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Monday, August 03, 2009

Generic versions of biologics?

While there are generic equivalents of many chemically based drugs that cost patients a fraction of the brand-name cost (thanks, I suppose, to the original drug patents expiring), this is not the case for the high-cost biologics -- like Enbrel, Humira and Remicade -- that many of us are turning to for relief. That high cost is raising the question of how long brand-name biologics can be exempt from market competition from "biosimilar" or "biogeneric" drugs -- especially in the U.S., where the high cost of drugs and cost containment are a crucial part of the health coverage debate. The Chicago Tribune has the story.

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