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Your SpAce

Welcome to Your SpAce. Here we build skills together to live life with axial SpA.

Your SpAce is for anyone with axial spondyloarthritis (axial SpA), including ankylosing spondylitis (AS). Whether you’ve just been diagnosed or you’ve been living with the condition for years, Your SpAce is here to support you.

We developed Your SpAce in collaboration with people with axial SpA and healthcare professionals, to support you to manage your axial SpA symptoms and navigate your care.

We’re a community, so take your time watching the videos and do get involved in the comments sections. We can help each other by sharing experiences and advice.

We know it can feel lonely when you live with a long-term condition. We’re running free monthly online meetups for you to meet other people with axial SpA, get support and share experiences.

Click to view video transcript

Welcome to Your SpAce. We’ll help you understand more about axial SpA and give you practical tools to manage the condition and the impact it has on your life.

Affecting 1 in 200 adults in the UK, axial SpA is a type of inflammatory arthritis, mainly affecting the spine. It’s a condition that tends to start when people are younger, with the average age being 26. It affects the same number of females as males.

There is a genetic link and 85-90% of people with axial SpA carry the HLA-B27 gene. However, it is possible to have axial SpA without this gene. It’s also possible to have the gene and never develop the condition. It’s important to remember that there’s nothing you’ve done to cause this condition.

Many people find that they experience a mixture of emotions when they first receive their diagnosis of axial SpA. You may feel relief at finally having an answer to the symptoms you’ve been experiencing. You may go through stages similar to that of grief, where you initially feel shock or denial, before moving through anger and depressive feelings.

Eventually, you may reach a time when you have accepted your condition. This enables you to engage with ways to help manage your condition and the impact it has on your life. The best way to support yourself through this process is to learn more about your condition in your own time. Understand which healthcare professionals are there to support you and meet other people with the same condition, to get support and share experiences. Your SpAce will help you to do this.

To start, let’s briefly explain what happens with axial SpA. Inflammation occurs in the body, affecting areas where muscles and ligaments attach to bones. The main areas this can affect is along the spine, ribs and in the sacroiliac joints. These are the joints between the base of the spine, the sacrum, and the pelvic bones.

For some people with axial SpA who have prolonged inflammation, the body tries to repair this area by laying down new bone. Over a number of years, this can lead to the bones fusing, but this doesn’t happen to everyone with axial SpA.

Axial SpA is short for axial spondyloarthritis. This is the umbrella term. Some people are diagnosed with non-radiographic axial spondyloarthritis – this means they have the symptoms of axial SpA, but when they have imaging done, there are no boney changes shown on an x-ray. They may or may not have inflammation shown on an MRI scan.

Ankylosing spondylitis, known as AS for short, is the name we use when someone has bone changes visible on an x-ray. Not all people with non-radiographic axial SpA will progress to AS.

There are many different symptoms of axial SpA and it affects every person differently. Not everyone will experience all of the symptoms and they may come and go over time. The main symptoms are:
– Pain in joints and muscles
– Joint and muscle stiffness
– And, fatigue – this is an overwhelming feeling of physical exhaustion. It can also be experienced as mental fatigue, also called brain fog.

Importantly, the symptoms can vary day to day, or even hour to hour. Along with these daily variations, axial SpA is a condition that can cause flares. A flare up is a period of time where the symptoms are worse. With many of these symptoms, they tend to be worse with rest and better with movement. This is usually why people with axial SpA can have difficulty sleeping because of pain or stiffness.

Now axial SpA is not just back pain. Some people experience inflammation in other areas of the body. In the eyes, this is a condition called uveitis. In the gut, inflammatory bowel disease can occur, such as Crohn’s or Ulcerative Colitis. And the skin can be affected, causing psoriasis. Not everyone with axial SpA will develop these symptoms.

Axial SpA is managed with a combination of medication, activity or exercise, and self-care techniques. It can take time to find what works for you. Ultimately, you can live a fulfilling life with axial SpA.

Your SpAce is here to support you and give you confidence in managing your axial SpA. Join our community by commenting on the videos as you work through them. When you’re ready, join one of our online meetings to meet other people with axial SpA.

Explore our topics below to understand more about axial SpA. Discover ways to manage your symptoms, with our videos and resources.

You can download a booklet of Your SpAce resources to print. You can also download to complete on your computer. Simply download the document, open with your usual PDF reader, click on the text boxes to complete, and then save a copy.

Explore the topics

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Discover ways to manage your pain. Understand medications that can be helpful. Hear from others with axial SpA about how they cope

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Join our community by attending one of our free monthly online meetups. They're relaxed and friendly. An opportunity to meet other people with axial SpA, get support and share experiences.

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