Ankylose This! Living with Ankylosing Spondylitis

Friday, April 28, 2006

Humira recommended for AS in Europe

The Associated Press reports that the anti-TNF drug Humira (adalimumab) has been recommended for approval in Europe for the treatment of severe and active ankylosing spondylitis by the scientific committee of the European Medicines Agency. A decision on approval is expected within 60 days.

See previous entries: Adalimumab (Humira) and ankylosing spondylitis; More about adalimumab.

Update, 4/29: AFX News in Forbes.

Thursday, April 27, 2006

Playing in pain, part 5

Another in an occasional series on young athletes with ankylosing spondylitis who continue to compete despite the pain and debilitation (see previous entries: 1, 2, 3, 4). This time, the Barrington Courier-Review takes a look at 14-year-old baseball player Max Younger, who was diagnosed with AS two years ago. Younger was practically ordered back onto the ballfield by his doctors, who wanted to make sure he remained active -- always critical with our disease. As is typical in such stories, the article puts Younger into the role of the example: not feeling sorry for himself, perservering despite the pain and so forth. I'm glad it's baseball: it's a good deal less high-impact than some of the other choices.

Monday, April 24, 2006

Things I can't do

Being diagnosed with a disease like ankylosing spondylitis means accepting limitations we've never had to face before. Of course, high-impact sports and other physical activity are the most obvious, and the easiest to come to terms with if you were never that much of an extreme athlete to begin with. ("I can't bungee jump? Shucks darn. Not like I ever wanted to.") But sometimes the limitations are more mundane, and therefore more surprising -- and harder to explain to friends and family. For example:

Dancing: Not that I was ever much of a dancing fool, but it goes without saying that it's hard on your feet and your spine -- as I found out one time when I was still at university. So, yeah, dancing's not so smart. Ow. But sometimes people don't understand: at a New Year's party, I was called out by another partygoer for not dancing -- she accused me, loudly, of sitting there and ogling the girls. (Actually, I was sitting there feeling sorry for myself -- I'd just found out about AS a couple of weeks before -- and her little act of humiliation didn't help. Spoiled the party for me, that did.)

Walking: Ironically, I have hiked twenty kilometres a day in the mountains, but walking in the city is much more problematic for me. It's probably a combination of harder surfaces and a slower pace. Walking through malls and museums -- actually, a combination of slow walking and standing still for short periods -- is particularly uncomfortable. I've had some difficulty explaining to people that this sort of thing is hard on me, and it's rather difficult, when you're in your late twenties or early thirties, to ask someone to give up their seat on a bench when you need to sit down. After much observation, I've been able to give the people I'm with a general rule: for every 90 minutes on my feet, I need 30 minutes sitting down. Seems to work.

What are some of the things you can't do that come as a surprise to the people you're with?

Wednesday, April 19, 2006

Medical references

Two medical texts on ankylosing spondylitis have been published this year: Ankylosing Spondylitis: Diagnosis and Management and Ankylosing Spondylitis and the Spondyloarthropathies. Both are pricey; neither, I suspect, are intended for patients, but for health-care providers.

Saturday, April 15, 2006

Ray of Hope

Dear All,
I just saw the article on young 9 yr old boy suffering from AS. This urged me to post this blog.
I agree that right now it is uncurable and our future all depends on how we cope with this delibitating disorder, but i am very positive about the medical options available presently. I had recently (4 months back) undergone bilateral noncemented total hip replacement surgery. And I shd say it works , I am back to work and could move around with much less pain as i used to have. Few months back, i was suffering so much as AS had attacked my whole body right from neck to toe, that it was impossible for me to think about surviving. It was literally death in instalments , day by day , hour by hour. But with 3 doses of Anti TNF , my condition improved dramatically. Howver by that time, my both hip joints were completly damaged, and i didn't had any option other than surgery. I am glad i did the surgery, though it was a hell but the results are dramatic. Now i am exercising as much as i can to keep myself healthy.
I want to tell my freinds here, that YES - AS is hell, but it is managable. Just go for the best treatment available, and try exercising as far as possible. Also listen to your body, AS varies from person to person, rest when required and workout when u have energy. Be happy and thank the nature that atleast u can do smthing about it. I had seen Quadreplegia patients while i was in hospital, and i felt that our condition is much better. Think of the present, nobody knows about future even a normal healthy person. Then atleast we know what may happen to us because of AS, so that we r prepared. Also live life fully, just accept that we have this disprder and carry on.

(Age- 27 years)

Saturday, April 01, 2006

A nine-year-old with AS

A story about a nine-year-old with ankylosing spondylitis from a Pennsylvania television station. Since it's local TV news, it's short on content and long on emotion -- meant to make us go "awww, poor kid" rather than think. (Can you tell that I despise local TV news as practiced in the United States?)