Ankylose This! Living with Ankylosing Spondylitis

Wednesday, March 22, 2006

Chris Small update

The Scotsman reports that the condition of snooker player and AS sufferer Chris Small has worsened drastically: he's retired and has been off medication for 18 months. A fundraising tournament on his behalf is being put together and will take place this summer.

See previous entries: AS and sports; Chris Small.

Sunday, March 12, 2006

Vladimir Kramnik, chess champion

Chess player Vladimir Kramnik, 30, the current Classical Chess Champion (as in boxing from time to time, the world title is not unified at the moment) and, by rating, the sixth-best chess player in the world, had to miss a major tournament in January due to health reasons. Because you're reading about it here, you will not be surprised to know that the health reasons were ankylosing spondylitis. In an interview posted yesterday on Chessbase News, Kramnik discusses his illness (not by name, unfortunately) and recuperation (I don't think he realizes that "fully cured" will never happen), as well as a reunification match in September (against the other world champion) and a match against a computer in November.

Friday, March 10, 2006

AS sufferer hit by disability cutbacks

Auto parts supplier Dana Corp has, in the course of filing for bankruptcy, has cut benefits to employees on long-term disability -- meaning they will no longer receive disability payments or health insurance. That has left Terry Stephens, a 44-year-old Dana employee who went on long-term disability last July due to his ankylosing spondylitis, in a dire situation, especially since one medication costs $1,700 a month (almost certainly an anti-TNF drug). Via Bent Not Broken.

Update 3/15: More on Terry Stephens from The Morning Sun, a Michigan daily.

Thursday, March 09, 2006

New Houston research study

The Houston Chronicle: "Patients with ankylosing spondylitis, an arthritic condition that affects the spine, may be eligible to participate in a new research study at the University of Texas Medical School at Houston."

Sunday, March 05, 2006

Australian with AS rescues motorist, receives award

An Australian man with ankylosing spondylitis will receive the Star of Courage for pulling a motorist from a burning vehicle (warning: pop-up) immediately after an accident. Michael Brown, who was helped by two other people, did so despite requiring crutches to walk, and suffered burns and, apparently, some spinal injury due to the rescue. What struck me, though, was the following quote from The Australian's article:

"It's an achievement, saving someone, but in my own mind it's more because my ex-wife wanted to put me in a home (due to the illness).

"For me, to do something when everyone had written me off ... it means I'm not worthless anymore," he said.

Good lord, what were the people around him doing to him that he could actually think such things?

Friday, March 03, 2006

Struck in the prime of life

There is an article by Tammy Laber "Struck in the prime of life" in the Arthritis supplement page TAS4 in today's Globe (Friday March 3, 2006).

A good overview, then it talks about biologics.

There is one sentence at the end of this paragraph that bothers me though

Often striking men in their prime, AS takes on average five years to diagnose. During that time the disease progresses; damage to the spine may become irreversible. Yet, AS can be confirmed with a blood test.

Err, no, I don't think so. Maybe just a science or an editing gap but I don't think this is right. HLA-B27 is present in most people with AS, but it's not diagnostic of AS (it's also present in people without AS).