Category: Patients

NRAS #WearPurpleForJIA – Wellbeing week

The last year has been a difficult one for most children so NRAS will be having a #WearPurpleForJIA Wellbeing Week on 14th-18th June. Each day during the week children and young people with JIA will be offered wellbeing classes including art, yoga, photography, dance and a relaxation/mental health class. In the evenings NRAS is hosting Facebook Live sessions discussing all things JIA and one where the children can ask the healthcare professionals questions.

It would be lovely to have you all involved to help raise awareness that children and young people can get arthritis too.…

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HMSA local groups update

HMSA local groups are still meeting virtually and this month’s theme is “Hobbies and Achievements”. It’s where the group get to share what they do for hobbies and explain how they overcome any obstacles with physical restrictions. It’s a bit of a ‘show and tell’ meeting and it’s always great to see how talented and inventive the participants are!

Here are the meeting dates for April:

Group

Date

Time

Group email address

Nottingham

11/4 & 24/4

2:00 PM

notts@hypermobility.org

Gateshead

17/4

10:30 AM

gateshead@hypermobility.org

…

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Survey findings from NRAS

Summary of article published in Rheumatology Advances in Practice on 5 January, 2021

“Disease impact of rheumatoid arthritis in patients not treated with advanced therapies; survey findings from the National Rheumatoid Arthritis Society”

Authors: Elena Nikiphorou, Hannah Jacklin, Ailsa Bosworth, Clare Jacklin, Patrick Kiely

Background

In 2020, NRAS conducted a survey amongst its members and non-members who had RA with a disease duration more than 2 years, who were not on advanced therapies (i.e. biologic/biosimilar or targeted synthetic DMARDs (JAK inhibitors)), with the aim of revealing the everyday impact of living with RA in people not treated with advanced therapies.…

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Edgar Stene Prize Winner

Every year, the Edgar Stene Prize is awarded to the person with a rheumatic or musculoskeletal disease (RMD) submitting the best essay describing their individual experience of living with their condition. The winner of the Edgar Stene Prize 2021 writing on the topic, “How digital solutions benefit my life as a person with an RMD”, is Ms Stine Bjørk Brøndum Jefsen from Denmark. She will attend the Virtual EULAR Congress 2021. The second place is awarded this year to Ms Sunčica Đorđević from Serbia and third place goes to Ms Penka Velkova from Bulgaria.…

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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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