We Count Things That Are Important
Originally posted at Walk Your AS Off

We Count Things That Are Important

May 29, 2015

Did you count your steps today? Are you more mindful of your steps now that you have been counting them?

This is weird, but I count people in a room. It’s a habit I was taught. I started working with kids when I was fourteen. As a camp counselor, youth groups counselor, teacher and as a director of informal education and camps, when you’re loading the bus coming back from a beach trip, you better know that you have everyone. When you’re working with teens on a camping trip, you better not be missing two at any time. I’m also pretty good at counting large rooms quickly.

Last time I spoke in front of a room with a thousand people, I did some quick math.
Odds are that at around 80 people in the room are HLA-B27 positive. Probably eight of them have AS. Among the 960 others, two probably have AS. So, at least 10 people in the room had axial spondyloarthritis (axSpA). If the people in the room had an average of 150 friends, then the room was friends to 1,500 people with ax-SpA and loosely connected to three times that.

There are around 41 genes, in addition to HLA-B27, that are associated with spondylitis. We thought a cure for AS was around the corner when HLA-B27 was found to have such a high association with the people that have the disease. I don’t believe any rheumatic disease has such close association to a specific gene. That was an exciting time. Back when docs waited for irreversible damage to be visible on xrays, it could take nearly 10 years – or longer- for people to be diagnosed with AS.

When kids had pain, they were told it’s growing pains. As we now understand, some people with non-radiographic spondyloarthritis (nr-axSpA) have all the pain and never fuse. Those people would be misdiagnosed with a long host of diseases from Fibromyalgia to psychological disabilities; some of us had unnecessary surgeries. HLA-B27 hasn’t given us a cure (yet), but it can and has reduced the time it takes to be diagnosed.

The close association of HLA-B27 with AS often means the more HLA-B27 there is in a population, then the more people develop AS. If you could wipe HLA-B27 off the earth, would you? Should you? I understand it’s a tempting thought.

Clinicians and researchers suspect that people positive with HLA-B27 do better against viruses than those that are negative. That may include AIDS. I understand that this class of genes (HLA) are responsible for detecting foreign substances and triggering the immune system. Drug molecules, bacteria, viruses, tumor cells and immunity. It’s apparently used as the basis for organ transplant rejection. Are we here today, because an ancestor with a gene – that made us susceptible to spondylitis – survived an epidemic? The more we know about genes and diseases, the sooner we can get personalized medicine. We will stop asking doctors “What are the odds of…?” and start asking “What will happen to me?”

Not only do researchers come to SAA looking for participants to understand, treat and cure spondylitis, researchers also come to SAA looking for people that are HLA-B27 positive for other conditions.

If you want to advance research, please join SAA. Your information will be kept confidential, but we will let you know of research opportunities and of the research results at

www.spondylitis.org

 

To learn more about the benefits of becoming an SAA member, please visit 

http://store.spondylitis.org/productlist_sm.aspx?department=1

Why Walk?

Why Walk?
From WalkYourASOff

May 12, 2015

Why walk?
Walking can be really tough. There was a time when my AS felt horrible after walking, even high impact activity such as running felt better. When you have a spondylitis disease, any and all activity feels completely out of the question at times. There are days when I force myself to do exercise and I’m still a ball of pain. Flares can be very stubborn.

If it feels so bad to move, why do it?

Because it feels worse not to. Every time I’ve given myself a break from exercise, it’s made me feel worse and flares last longer.

For many of us, there will be days in May that we will not want to walk. We need to listen to our bodies. If you are anything like me, then I’d highly suggest doing some activity. On the really tough days, deep breathing and laying flat on the floor counts. On other days, do what you can. For WYASO, use a conversion table to convert the activity to steps. Btw, bowling on the Wii is 61 steps/minute.

‘Dr. Google’ will give you a thousand results of the benefits of exercise. Refine your search to spondylitis and exercise and you will see peer reviewed, evidence based studies specifically linking exercise with better outcomes for people with spondylitis. For those of you with osteoarthritis, it helps that too.

Spondylitis treatment has two major components: medication to control inflammation and exercise to maintain mobility, strength and function of the joints involved. Exercise is something to discuss regularly with your doctor.

Exercise is Essential is the title of Chapter 5 of SAA’s Straight Talk On Spondylitis book.

“Exercise is an integral part of any spondylitis program… Participating in sports and recreational activities is part of the management of spondylitis. A proper level of fitness and activity helps decrease pain and stiffness.

Activity also nourishes bones and consequently helps combat osteoporosis.” This book is designed to provide information necessary to manage spondylitis and a good chunk of it details exercises. There is a step-by-step guide and a handy poster.

If you’re a goal oriented person, set your intention by creating a physical ‘wish list’. Perhaps you want a healthy cardiovascular system, increased strength, improved daily functioning, increased resilience, reduced fatigue, reduced depression, improved posture, improved flexibility, to have fun with movement, improved confidence and self image, etc.

For me, I’m concerned with increased risk of heart issues with long term inflammation, so cardio is important. I’m also concerned about susceptibility to fractures when I age, so maintaining balance skills is important. Function and quality of life is important, so everyday strength and range of motion is important. I cycle, lift light weights and practice yoga. I also find being a part of a proactive, informed and supportive community to be beneficial. So, WYASO is important.

If you still need a reason to walk then walk because you can. Make it a physical celebration of what you can do. Spondylitis affects people differently. Some people in our community are not able to walk in May. If you can, walk and add a prayer for those that can’t.

SAA has additional resources on exercise:

• Physical Therapist and fellow spondy, Sturdy McKee provided a wonderful overview of physical therapy for spondylitis (free) http://www.spondylitis.org/press/news/630-la-seminar-video.aspx
• SAA’s exercise DVD is another excellent resource for exercises specifically for people living with spondylitis (fee) http://store.spondylitis.org/productlist.aspx?department=37
• SAA’s brochure The Role of Exercise in Spondyloarthritis (free) http://store.spondylitis.org/productlist.aspx?department=3