Category: Patients

Living with a stranger – ‘The Uninvited Guest’ in the time of COVID

Guest blog by Emily Earle

Emily’s 12 year old daughter was diagnosed with JIA in 2010 at the age of 2. Emily now volunteers for the charity ‘CCAA – Kids with Arthritis’ running their local area network of support groups. CCAA offers support to children with JIA and their families across England and Wales.

Life with a child who has a medical condition can be challenging at any time. Families usually manage because we have to. Quite simply, we do not get the choice to say: ‘No thanks!…

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New video: How to self-examine for tender and swollen joints in rheumatoid arthritis

The coronavirus pandemic has changed the delivery of healthcare services, creating challenges for healthcare professionals and people living with musculoskeletal conditions. Patients are increasingly required to monitor their own disease activity and report on their condition during remote or virtual consultations.

To address this, the Centre for Epidemiology Versus Arthritis has been working on the REmote MOnitoring of Rheumatoid Arthritis (REMORA) study. REMORA is a smartphone app study that encourages people with rheumatoid arthritis (RA) to monitor and record their daily symptoms.…

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X-Factor star learns about axial SpA

Talia Dean meets Dasha and Gillian to learn more about axial SpA (AS)

Singer-songwriter, Talia Dean, made a big announcement in January 2021. In 2020 she was diagnosed with axial SpA (AS). Watch this video as she meets Dasha and Gillian, who live with the disease, and starts her journey towards becoming an #ASWarrior. #TaliasASJourney

See Talia’s story in the BBC article, 15 January 2021:
‘My back pain was misdiagnosed for 15 years – now I can’t dance‘

The new NRAS Young Persons Project Co-Ordinator

by Debbie Wilson, NRAS

I am the new Young Persons Project Co-Ordinator at NRAS. I come to this role with a very personal experience of JIA. I have had JIA nearly all my life and a few years ago my daughter was diagnosed with it too. Thankfully, due to medical advances, the disease can be easier to manage. Unfortunately, some things have not changed: mainly the lack of understanding and awareness of JIA. There is still the stigma of having JIA and I was quite shocked that my daughter got the same comments I used to get, such as: “my granny has that”; “that’s an old person’s disease”; “you are too young to get arthritis.”…

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Chronic Pain and the pandemic

Recently, Pain Alliance Europe conducted a 6-week short survey on Covid-19 and chronic pain in twelve languages to see the current situation of chronic pain patients in Europe.

The survey showed initial results that during the pandemic 15% of people worried and feared taking prescribed medication. There was also impact on self-management plans – of those people who had a plan, 29% indicate they are not able to continue with their care plan. From all countries, the respondents in the UK reported the highest impact of pain interfering with their normal functionality.…

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Making decisions about shielding

Making decisions about shielding – based on guidance issued 22 September for England

This document is based on guidance for England. The principles of assessing your own risk and the risk of different activities is the same wherever you live. If you live in Wales, Scotland or Northern Ireland, check your national guidance and advice for people who are clinically extremely vulnerable – see links below.

Just over 2 million people in England were advised earlier this year that they needed to shield because they are extremely vulnerable to the COVID-19 virus.…

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Video: the Right Start Service for RA patients

NRAS has a new video on the benefits of the Right Start Service for patients newly or recently diagnosed with rheumatoid arthritis.

New2RA Right Start is a service launched by the National Rheumatoid Arthritis Society (NRAS) at the BSR 2019 congress and to which many rheumatology services are referring their patients. Right Start supports people newly diagnosed with Rheumatoid Arthritis to understand their diagnosis and how it is likely to affect them. Getting the right, supportive start can help people to make adjustments to their behaviour, lifestyle and health beliefs and understand why self-management is essential, and learn how to make those important first steps to managing their disease effectively.…

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Survey on the effects of COVID-19 and lockdown

Around half of those with arthritis report increased pain during the pandemic
With over half finding it more difficult to access healthcare

During the COVID-19 pandemic, 42% of people living with arthritis reported that their pain has increased [1] according to a survey by UK Charity Arthritis Action looking at the effects of COVID-19 and lockdown on the daily lives of people with arthritis. Considering there are over 10 million people living with some form of arthritis in the UK [i] this would equate to over 4 million people experiencing increased arthritis pain during the ongoing pandemic.…

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