We Count Things That Are Important

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 

https://www.spondylitis.org/support/membership.aspx