Naomi Creek Arthritis Interview

Arthritis is an older person's disease? Actually, No.

While most Australians might know an older adult (or even a younger athlete) living with osteoarthritis, many may not know that arthritis can strike at any age, even in childhood. That's why this winter CreakyJoints Australia , the go-to source for Australian arthritis patients and their families who are seeking education, support, advocacy and patient-centred research, is raising awareness that arthritis can be diagnosed in anyone, particularly inflammatory forms such as rheumatoid arthritis, psoriatic arthritis, and ankylosing spondylosis, to name a few.

What is Arthritis? It's more than "CreakyJoints"

According to the Australian Health Survey, in 2011-12, 14.8 percent of Australians (or around 3.3 million people) had arthritis, with prevalence higher amongst women than men.

The two most common types of arthritis are osteoarthritis and rheumatoid arthritis (RA). Osteoarthritis causes cartilage " the tissue that covers the ends of bones at the joints " to break down due to age, injury or infection. While the risk for developing osteoarthritis is higher in older adults, it can also develop in individuals who have sustained injury or excessively used their joints, such as athletes.

Forms of inflammatory arthritis, such as rheumatoid arthritis, are autoimmune disorders in which the person's immune system attacks the lining of the joints. The cause of autoimmune forms is not known, but it is believed to have a genetic component. In addition, diseases, such as psoriasis or lupus, can cause other types of arthritis. There are a number of risk factors that increase your likelihood of developing arthritis, including advanced age; gender (women are more likely to get certain types of arthritis, while some types are more prevalent in men); previous injury to a joint; and obesity.

Arthritis Can Strike Young

Arthritis can be difficult to diagnose, particularly because people present a wide variety of symptoms that can mimic other diseases. However, according to arthritis patient advocate and national coordinator of CreakyJoints Australia, Naomi Creek, there is one misconception about arthritis that is potentially harmful: "People think it's an 'older person's' disease and that's simply not accurate", she cautions.

Diagnosed with rheumatoid arthritis (RA) at the age of twelve, Creek is concerned many Australians in their twenties, thirties, and forties may be inadvertently ignoring the symptoms of RA and other inflammatory types of arthritis, simply because they think they're 'too young for arthritis'.

"It's vital that Australians – even young, healthy, and active ones – act swiftly if they show prolonged symptoms of these diseases."

According to CreakyJoints Australia, RA affects around 1-2% of the population, or around 450,000 Australians.

Therefore, Creek urges everyone to understand the main symptoms of this condition. These include:
Joint stiffness (particularly in the morning)
Joint inflammation (visible swelling and possibly redness)
Tender and sore joints
Noticeable ongoing fatigue (not just general tiredness)
Loss of physical function (losing strength and the ability to move your body the way it normally should)

Creek says, "These symptoms may come and go, especially in the early stages of the disease. For years, my doctor kept attributing my symptoms as "growing pains." But if you have a lingering problem – that joint is just not getting better over a number of months, or if you have multiple symptoms – please see your doctor immediately.

"Today, it's rare for anyone to have undergone double knee and hip replacements by the age of 25, as I did," Creek adds. "Further, most people diagnosed with RA today will not need to fear that outcome because advanced treatments, such as biologics, can manage arthritis symptoms and reduce the risk for permanent joint damage and disability if the disease is caught and treated early. In some instances, remission can be achieved. It is quite possible you can enjoy a normal life", she says.

Interview with Naomi Creek, CreakyJoints Australia

Having lived with rheumatoid arthritis most of her life, Naomi Creek is the national coordinator for CreakyJoints Australia. A long-time advocate for the arthritis community, Naomi also co-leads the Young Women's Arthritis Support Group (in Victoria) and previously was a community guest speaker, telephone helpline operator, and board member of Arthritis Victoria. Naomi lives in Victoria, Australia and is a graphic designer, artist and self-confessed volunteer junkie.


Question: What is CreakyJoints Australia?

Naomi Creek: Founded in 2015, CreakyJoints Australia is the go-to source online for Australian arthritis patients and their families who are seeking education, support, advocacy and information about patient-centred research. CreakyJoints Australia connects arthritis patients throughout the country via our social media channels and website, while providing opportunities for members to proactively advocate on behalf of the arthritis community and participate in research that will broaden the global understanding of arthritis management.

CreakyJoints Australia is part of the Global Healthy Living Foundation, a non-profit organisation whose mission is to improve the quality of life for people with chronic illness.


Question: What inspired the creation of this resource?

Naomi Creek: CreakyJoints Australia is modelled after the U.S.-based patient-powered organisation, CreakyJoints, founded in 1999 by arthritis patient Seth Ginsberg and social entrepreneur Louis Tharp. Beginning in 2012, Seth and Lou realised that arthritis patients and their families in Australia could benefit from the resources that patients created and/or found useful in America. A commitment to create the first U.S.-Australia patient powered organisation was made with the formation of GHLF PTY LTD in 2015. Shortly after, beginning in 2017, a National Patient Council of Australian arthritis patients was convened to create and oversee the CreakyJoints Australia patient agenda going forward.


Question: What message are you hoping to spread with CreakyJoints Australia?

Naomi Creek: Our mission is to empower Australians living with arthritis to put themselves at the centre of their own care by vocalising their treatment preferences and working in partnership with their healthcare providers.

Question: How common is arthritis?

Naomi Creek: According to the Australian Health Survey , in 2011-12, 14.8 percent of Australians (or around 3.3 million people) had arthritis, with prevalence higher amongst women than men.

The two most common types of arthritis are osteoarthritis and rheumatoid arthritis (RA), however the term covers over 100 different types of conditions that affect bones, joints, muscle and tissue. Osteoarthritis causes cartilage " the tissue that covers the ends of bones at the joints " to break down due to age, injury or infection.

Forms of inflammatory arthritis, such as rheumatoid arthritis, are autoimmune disorders in which the person's immune system attacks the lining of the joints.


Question: Why is it important that younger Australians know the signs and symptoms of arthritis?

Naomi Creek: Often thought of as an old person's disease, arthritis can strike at any age. Some forms of arthritis, particularly inflammatory types can cause permanent joint damage if not treated early, so learning what signs and symptoms to look out for can help minimise this and ensure the best future for those of younger age. If you experience some or all of these symptoms, see your doctor for advice:

- Joint stiffness (particularly in the morning)
- Joint inflammation (visible swelling and possibly redness)
- Tender and sore joints
- Noticeable ongoing fatigue (not just general tiredness)
- Loss of physical function (losing strength and the ability to move your body the way it normally should)


Question: Are you able to tell us about your arthritis diagnosis?

Naomi Creek: I was diagnosed with Rheumatoid Arthritis (RA) at age 12. I regularly complained of sore feet in the couple of years before my diagnosis. I was a very active, physical and flexible child and it was unusual for me to feel sore or physically unwell. For some time, the doctors dismissed my symptoms as 'growing pains', but they gradually became more frequent. Then, one day, I simply couldn't stand up. My legs wouldn't hold me.

I spent a week in hospital while they did lot blood tests, x-rays and examinations before coming away with my diagnosis. As I was so young I really didn't understand what I had and how it would end up shaping my life. It was also difficult for my family and friends to understand as it seemed uncommon for a child to have arthritis.

Question: How does arthritis affect you, on a daily basis?

Naomi Creek: For the past few years I have been well managed although I still experience pain each day to some degree. Having had RA for 36 years now I unfortunately have a lot of joint damage, which resulted in me having both knees and hips replaced twice as well as shoulder replacement in that time. These have provided improved function and reduced pain however they are not perfect and still result in some pain and limited flexibility. For example I can only bend my knees 90 degrees so I cannot squat or get onto the ground very easily. RA also affects my hands, feet and elbows, so I need to ensure I don't stand for lengthy periods or do repetitive work with my hands as finger and wrist pain can make using a computer, dressing, driving and other daily activities difficult.


Question: How do you manage your symptoms, currently?

Naomi Creek: I manage my condition in a very holistic way. It is important to not rely on one method of treatment to help conditions like arthritis or RA as there are many factors that need to be addressed. I am on a daily regime of medicines prescribed by my rheumatologist, which include anti-inflammatories, a disease modifying drug called Methotrexate and a biologic infusion which I have administered in hospital once a month. I eat a very healthy vegetarian diet with minimal processed foods. I do yoga and ensure I do some sort of activity each day to keep my muscles strong. I have a good sleeping routine and use relaxation or meditation to reduce stress and keep my mind positive.


Question: Is it possible to prevent arthritis?

Naomi Creek: There are a number of risk factors that increase your likelihood of developing arthritis, including advanced age; gender (women are more likely to get certain types of arthritis, while some types are more prevalent in men); previous injury to a joint; and obesity. While the risk for developing osteoarthritis is higher in older adults, it can also develop in individuals who have sustained injury or excessively used their joints, such as athletes .

The cause and therefore the prevention of autoimmune forms is not known, but it is believed to have a genetic component. In addition, diseases, such as psoriasis or lupus, can cause other types of arthritis.

Smoking is linked to an increased chance of developing some types of inflammatory arthritis and there is much research being done around the microbiome and how our gut bacteria could play a role in preventing disease.

For more information about joining (for free) visit: www.CreakyJoints.org.au


Interview by Brooke Hunter