Spreading awareness for a disease helps in all sorts of ways. Ask the ‘ice bucket’ people. For Spondylitis, awareness improves lives. Everyone ‘walking their AS off’ already understands this and has their own story to share.
April is Spondylitis Awareness Month
Saturday, May 2, 2015 is World AS Day
Please join the Spondylitis awareness campaign this month and have a chance to win an ipad mini!
In my position at SAA and as a support group leader, I’m exposed to a lot of reasons.
What happens when people are unaware?
- People ‘self medicate’ with alcohol and drug abuse.
- People break their neck with a roller coaster ride (or a ‘simple’ fall).
- People have permanent vision damage including loss of eyesight.
- People are considered whiners, lazy & antisocial.
- People think it’s normal ‘growing pains’ when a child on the floor crying from hip pain.
- People have spine or hip surgery, merely to have the pain return.
- People (docs) mistakenly diagnose patients with mental illness instead of referring to a rheumatologist.
- People (docs including chiropractors) are confused why their patients are not getting better.
- People (radiologists) don’t notice ankylosing spondylitis on the x-ray and MRI.
- People forget to donate to this pretty common, painful and often permanently disabling disease.
- People are undiagnosed to the point that it’s too late for treatments to be effective in stopping permanent damage to the spine.
- People don’t know why they are angry and short tempered.
- People may never fully trust doctors again.
- People lose out on having close, long term relationships with their parents, spouses and children.
- People don’t know that their digestion, vision, small joint pain, back pain, fatigue and limited range of motion, osteoporosis, sciatic pain, heart and lung issues are all related.
- People feel isolated, alone, depressed.
- People don’t know what can be done to feel better.
Seronegative spondyloarthritides, more commonly called spondyloarthritis or simply spondylitis, refers to a
group of auto inflammatory diseases that primarily affect the spine and other joints.
The CDC estimates at least 2.7 million adults in the USA have axial spondyloarthritis. That’s not rare. Men and women get this. Rheumatologists diagnose and treat this disease. There is a genetic component and so there is a tendency to occur in more than one family member.
There is no definitive blood test and diagnosis is not simple. Incredibly, people can be relieved to hear that they have this painful, incurable disease… because they have been living in pain without any medical answers for years and years.
Common factors used to diagnose spondylitis include:
- Onset usually under 45 years
- Pain persists for more than 3 months
- Back pain and stiffness worsen with immobility, and eases with exercise
- NSAIDS usually help
A lot of progress has been made in the 30 years the SAA has been around. There is a network of support. There are researchers improving lives and seeking a cure. There is reliable, evidence based information in a magazine, website, email newsletters, at seminars and just a phone call away.
There is advocacy work being done. Visit www.spondylitis.org for more information.