Amy Milne is a fit, social, energetic, and healthy 38-year-old woman when her autoimmune disease allows. When it doesn’t, she battles with pain, inflammation, fatigue, and not sleeping well.

Ankylosing spondylitis (AS) does that. Usually diagnosed between the age of 13 and 35, AS causes chronic back and neck pain, and stiffness.

Through trial and error, Amy has learned what makes her symptoms worse and what helps minimise them. “Too much vigorous exercise late in the day or more than a glass or two of wine cause havoc with the inflammation in my body – so I need to be mindful not to overdo it. Sometimes I have to listen to my body and take a break. It’s not something that comes naturally though to me”. 

Amy stays as active as much as possible by going to the gym almost every day. She enjoys running around Hagley Park or goes for a walk up the Port Hills. 

The reason she struggles with fatigue and sleep is that the inflammation in the body makes her hot and uncomfortable at night, and this disrupts sleep.

“The fatigue makes life challenging. I struggle some days to focus or get motivated because I’m just so exhausted. It’s a constant battle mentally because I hate not being alert or able to do the things I want to do”.

“This year has been particularly challenging for my health as I’ve caught a couple of bad respiratory illnesses. The first was in March when I got a severe sinus infection. Then recently I got bronchitis. A lot of illnesses have been going around this winter, but my medication makes me more susceptible, and they’ve been harsh when they’ve hit!”

Amy says her immune system is not as resilient as it once was. Eating well, going to bed early and avoiding alcohol have become critical to staying healthy.

A lot of people don’t want to know about AS

“People see me as a social, energetic, healthy person, and when I’m not, it seems almost like it’s bizarre to them. When I try to explain my struggles with having AS and the medications I take, their eyes glaze over. A lot of people don’t want to know about it. They give an ‘oh, poor you, that’s terrible’ ‘or you’re too young and fit to have that’ – as if I’m lying, and then move on”.

Amy is not looking for sympathy. Amy, and the many more people living with AS, need support and understanding. 

Most people feel uncomfortable to ask for help. Many people with AS are young and independent and struggle to accept that they need assistance sometimes. 

“I struggle to ask for help because I’m independent and hate feeling as though I’m burdening anyone. But sometimes, I do need an extra hand around the house, especially on days that I feel like I’ve been hit by a bus by the pain and fatigue.” 

What is AS?

Ankylosing spondylitis is a form of inflammatory arthritis that affects the spine and joints of the lower back. Symptoms include chronic back pain and stiffness. In severe cases, the affected joints in the spine may become fused and inflexible. There may also be deformity or curving of the spine.

The condition can occur at any age but is most likely to develop between the ages of 13 and 35 years and is uncommon after the age of 40. It affects men almost three times more often than women.

Genetic factors may cause AS. About half the risk is related to a gene called HLA-B27, although the gene is also present in healthy people who don’t have the condition. Genetic links between AS and Crohn’s disease or inflammation of the bowel exist too.

There is no cure, but treatment and effective self-management can minimise symptoms and prevent complications.

Cost of AS and other forms of arthritis

Medical costs for all forms of arthritis amounted to $1 billion in 2018. Of that, a third were in-hospital expenses (public and private). A staggering 48% of people with arthritis are of working age, people with families and responsibilities, people trying to make a life for themselves. 

The findings in the recent Economic Cost of Arthritis in New Zealand report have significant implications for how the health system manages arthritis. Some key findings related to health care costs:

• Health sector costs associated with arthritis were estimated to be $992.5 million in 2018, equivalent to 23% of total financial costs. 
• Of this, an estimated one third is attributable to hospital inpatient costs ($321.0 million). Public inpatient costs were expected to be $244.0 million, and private inpatient costs were estimated to be significantly lower, at $77.0 million. 
• Residential aged cared costs related to arthritis were $97.9 million, while arthritis-related pathology and diagnostic imaging costs were $96.4 million, and pharmaceutical costs were $69.5 million.

Arthritis can affect anyone at any age, and new figures released in 2018 reveal that more than 670,000 people in New Zealand have a form of arthritis, 48% of which are of working age.