Patients | ARMA

Tiny Magic Moments: how treating my RMD has influenced my hopes for the future

By Anna Wilson – EULAR Edgar Stene Prize essay competition, runner-up in the UK national competition

After almost nine years of increasing intensity, the pain throughout my body was becoming unbearable. I vividly remember arriving at my doctor’s appointment that day to receive my blood test results, my fingers tightly clutching a list of symptoms.

“I know it sounds like I’m a hypochondriac,” I began awkwardly, “but I get inflamed eyes, rib cage pain, lower back spasms and stabbing in my hips that is so bad I struggle to walk in the morning.…

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Charity collaborative on mental health support in paediatric rheumatology

A group of JIA charities (CCAA, Juvenile Arthritis Research, JIA@NRAS, SNAC and Versus Arthritis), working collaboratively with the British Society for Rheumatology, is investigating access to mental health provision and support within paediatric rheumatology.

In February 2022 CCAA sent out a survey to families which ran for three weeks and received just over 300 responses. The plan is to use the information gathered to help campaign for better services for children, young people and their families. CCAA is incredibly grateful to all those families who took time to respond and to share their experiences.…

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Blood matters

Blood Matters is the new National Rheumatoid Arthritis Society (NRAS) guide to the blood tests used in managing rheumatoid arthritis (RA) and adult juvenile idiopathic arthritis (JIA).

Blood tests are an important part of both the diagnosis and monitoring of RA and JIA, but the different tests, abbreviations and numbers can be confusing, and it might not always be clear to you what the purpose of each test is, why it’s important and what the results mean.

NRAS has created this resource because they strongly believe that having a good understanding of your blood tests is important to help you to manage your condition and improve outcomes.…

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How treating my rheumatic disease has influenced my hopes for the future

Guest blog by Chantal Lyons. This essay was the national selection entry winner for the UK for the Edgar Stene Prize 2022

Everything changed in the year I turned twenty-three. In the spring, I began to run, dragging my unfit body off the sofa and into the local park. In the summer, I began to dream of running the London Marathon like my father had. And in the autumn, I could no longer ignore the white-hot pain growing in my hips and back.…

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Introducing Informatree

The Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) is delighted to launch Informatree, a brand new, free website resource aimed at helping people with psoriatic arthritis to live well.

People living with psoriatic arthritis worked together with healthcare professionals who treat people with the condition, psychologists and researchers to develop the new resource. The contents were agreed upon by people living with psoriatic arthritis and clinicians.

The project was led by the University of Oxford in the United Kingdom, and informed by people living with psoriatic arthritis worldwide.…

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Brace Yourself! PROP-OA knee pain trial

How a research trial will support people living with knee pain and osteoarthritis though advice, exercise and knee braces

Knee pain affects one in four people over 45 years in the UK. The most common cause is osteoarthritis, but many people will suffer without getting the diagnosis.

Osteoarthritis and its symptoms vary a lot and negatively affect people’s daily lives. There is no cure for osteoarthritis, but with treatment, symptoms can be improved and allow people to stay active.

Wearing a knee brace is one of the options that could help by reducing the load going through the joint and improving its stability.…

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Online Pain Toolkit 5-day workshop

Online Pain Toolkit workshop for UK and English-speaking EU residents
Presented by The Pain Toolkit – the home of supported pain self-management.

Many people may not have access to pain management programmes and so the Pain Toolkit has organised a team of experiences coaches to run a 5-day (2.5hrs a day) workshop. The workshop is open to people living with persistent pain, and open to maximum of 10 participants. Pain Toolkit will be running three workshops during 2022 in Canada and Australia.…

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Psoriasis Association’s Facebook Live sessions

New videos of Facebook Live sessions on psoriasis, psoriatic arthritis and lifestyle now available

The Psoriasis Association is delighted to bring you recordings from the two Facebook Live sessions that we held during Psoriasis Awareness Week 2021. The videos feature information and advice from experts in nutrition and exercise, based on this year’s Psoriasis Awareness Week theme – lifestyle factors that may be important to consider when living with psoriasis or psoriatic arthritis – including diet and exercise.

The first video ‘Pso: Let’s Talk Food’ sees Consultant Dermatologist and nutrition expert, Dr Thiviyani Maruthappu, and Professor of Health Psychology/Behavioural Medicine at Cardiff University, Professor Christine Bundy, examine the evidence for nutrition in psoriasis.…

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Pain Forecast survey

In 2016, the Centre for Epidemiology Versus Arthritis at the University of Manchester ran a large study, collecting data about people’s symptoms and comparing this to the weather.

Using this data, the researchers are now aiming to build a pain forecast. This will be like a weather forecast but used for predicting pain severity in the near future. Being able to forecast pain severity in this way will provide benefits for patients in the future.

In this second phase, a survey will ask people with chronic pain what information that they would be interested in receiving about pain severity.…

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Relaunched Managing JIA in School booklet

On World Arthritis Day, JIA-at-NRAS relaunched their Managing JIA in School booklet. The update provides information on all aspects of education and is a useful resource for parents, teachers and for the child themselves. There is more information about how to inform the school about your child’s JIA, individual health care plan, tips for teachers and children and how to manage flares in school.

There are also a range of articles aimed at improving the experience of going through school with JIA, with helpful information on a range of aspects of school life, including completing an Individual Healthcare Plan (IHP) and covering letter to the school, coping with exam stress and minimising the effect of heavy school bags on the joints.…

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