Last year (to the day exactly) I wrote about the signs of AS and mentioned that one of the signs is having a family history of AS. And in particular one called HLA-B27. In my post I gave a brief overview of what it meant, but I found a much more detailed explanation while I was looking around for something else. It’s called “The ramifications of HLA-B27” – it’s an entry in the Journal of the Royal Society of Medicine so it’s rather technical. (I think I managed to understand about 1/2 to 2/3 of it, but it looked detailed and the parts that I understood looked accurate as I understand it.)
Basically, the upshot is, if you have some of the symptoms of inflammatory back pain then your doctor can send you for a blood test. (If you’re a white Brit) You have an 8% chance of having the HLA-B27 gene. Only 1.3% of the people with the HLA-B27 gene have Ankylosing Spondylitis. (That’s a 0.00104% chance of you having AS and being HLA-B27 positive by the way – we’re rare, although some call us special…) Continue reading “All in the Genes (WYASO Day 5)”
Almost every source on information for AS stresses the importance of exercise in helping to improve the symptoms of Ankylosing Spondylitis. In fact the NASS website has a whole section dedicated to it. They also went out and made an app that you can download. The thing that I love about the NASS approach is that it doesn’t specify one individual exercise, unlike some newspaper articles that I’ve seen.
(I saw one a couple of years ago that described a famous Ankylosaur and said that he ran 9/10 miles a day and did 1,000 sit ups, just to prevent him from ending up in a wheelchair. It did the rounds again in March when he moved to a new TV show and needed a dramatic tagline. Who said the Daily Express, Mirror, Daily Star, and the Sun weren’t quality newspapers?) Continue reading “An Exercise in Mobility (WYASO Day 3)”
There are a lot of challenges out there around the internet. Squats, Ice Buckets, Planking and some really scary ones that I don’t even want to get into! But one of the first that I can remember was the 30 Day Song Challenge. There are various iterations of this but I think I’ve chosen one that should give us some variation and hopefully keep people guessing! Yesterday, I added an extra in (as May has 31 days). But this is the version that I’m going to be using this year.
This means that Day 1 is today (2 May, just to confuse you all) and so I need a song with a colour in the title. The team colour for the Orange Apples is (not surprisingly) orange, because that’s the colour used by the National Ankylosing Spondylitis Society. But I didn’t want to be so obvious so today I’ve opted for The Presidents of the United States of America and Peaches…
Continue reading “That’s not a challenge! (WYASO Day 2)”
It’s that time of year again, it’s 1st May and Walk Your AS Off has started. This means that you can expect to hear me bleating on about Ankylosing Spondylitis a bit more regularly than usual, as well as keeping tally of my Steps to add to my team’s total.
Walk Your AS Off is an annual event for Ankylosing Spondylitis. Although the official AS Awareness Month is April, I mostly conflate WYASO and AS Awareness, rather than stretching it into two months. As well as raising awareness we compete in teams, against teams all over the world. It’s a friendly competition, but still, it’s there.
And as if that wasn’t enough – we also try to raise funds. I’m a member of a group called the Orange Apples who raise money for NASS (the National Ankylosing Spondylitis Society). So, if at any point this month you’re feeling a bit flush and you want to help out a small charity that’s doing a shed load of good work, feel free to go to the JustGiving page or straight to the NASS Shop and make a purchase or donation. Continue reading “WYASO 2017”
I was worried for a while, I wasn’t sure if I’d make my target. I’d set myself a challenge of 300,000 steps (10,000/day with a little leeway for my recovery days after my Humira injection because of the Humira Hangover). I know that there are conversion charts for other activities but I try to get actual steps.
I know that it doesn’t sound like a lot, but I can assure you that (especially early in the morning) it’s not as easy as it sounds. But the NHS has the 10,000 Step Challenge so I thought that it was a good target to set. So, how did I do? I hear you cry (very quietly of course).
Continue reading “Walk Your AS Off 2016 – My Total”
There was a meme that did the rounds for Invisible Illness Week. I’ve decided to resurrect it for WYASO month. (I’ve amended Q17 as we don’t have medical commercials in the UK.)
1. The illness I live with is: Ankylosing Spondylitis. But like most people with auto immune conditions, it’s not alone. I’ve also had Reynaud’s for about 20 years as well as mild IBS (inflammatory not irritable).
2. I was diagnosed with it in the year: 2014.
3. But I had symptoms since: I was 17 (that’s 18 years for anyone who wants to do the sums…)
4. The biggest adjustment I’ve had to make is: Admitting my limits and living within them. There were LARP events that I went to in my younger days where I actually overdosed on painkillers (as a word of advice, 18 dihydrocodeine in the space of 8 hours is a bad idea boys and girls…)
5. Most people assume: That I have a back condition, not realising that it’s actually an immune system issue that affects my back.
6. The hardest part about mornings are: Everything until I’ve had the chance to get moving!
7. My favorite medical TV show is: Doctor Who. (What!? He’s The Doctor, the definitive article, there’s only one of him!) Continue reading “30 Things About My Invisible Illness You May Not Know”
I can’t believe that it’s only been a year since I wrote the post that started this blog. That it’s only been a year since that epically long post that was longer than I ever expected it to be. But life rolls on and another WYASO is looming. I’m hoping that those people who choose to read this are already aware of AS, and particularly WYASO. But just in case you aren’t (where the buggery have you been for a year!? I’ve been bleating on about it like nobody’s business!) AS is Ankylosing Spondylitis, an autoimmune condition that primarily affects … Continue reading Walk Your AS Off 2016
I didn’t want to bleat on about this too early as people might get bored if I bleated on about it a lot. But it’s less than a month now until Walk Your AS Off 2016.
For those of you who don’t know what this is, it’s a Worldwide awareness raising event every year throughout May (World Ankylosing Spondylitis Awareness month) to raise awareness of Ankylosing Spondylitis. And this year is its first time as a fully registered charity in its own right. If you’d like to join in then all you need to do is register on the website and record how many steps you take each day. Last year we were able to walk all the way to Mars!
There are lots of teams around the world and there’s a bit of friendly competition. But the important thing is raising awareness. Fundraising is also welcomed (obviously), and I’m a member of the Orange Apples who raise money for NASS (National Ankylosing Spondylitis Society), the UK AS charity. Continue reading “Walk Your AS Off 2016 and NASS at 40”