The WORD is out!

The countdown is on until WORD Day 2019 – the first international awareness day for children and young people living with rheumatic diseases, taking place on Monday 18 March 2019. Now is the time to get involved!

WOrld young Rheumatic Diseases Day (WORD Day) will be an annual international awareness day that will take place on the 18th March from 2019 onwards.

The aim of WORD Day

The aim of WORD Day is to first raise awareness of rheumatic diseases in children and young people, while informing children and young people, parents, healthcare professionals, teachers, and the general public about the importance of early diagnosis, and a quick referral to specialist paediatric rheumatologists. It is anticipated that awareness will have a ripple effect on all levels of practitioners who come in contact with these children and young people, improving the level of treatment they receive and their prognosis worldwide.

About paediatric rheumatic diseases

Paediatric or juvenile rheumatic diseases are a group of long-term, chronic inflammatory conditions of the musculoskeletal system. They are often unknown, not only to the general public, but even to some healthcare professionals. These conditions range from the relatively common to the extremely rare, including: Juvenile Idiopathic Arthritis (JIA), of which there are several subtypes; Juvenile Systemic Lupus Erythematosus (jSLE); Juvenile Dermatomyositis (JDM); Scleroderma; autoinflammatory diseases such as Familial Mediterranean Fever (FMF); Rheumatic fever; Kawasaki disease, fibromyalgia and many more. Many of these illnesses are chronic, which means that they persist for many years or indefinitely, and need to be managed appropriately to minimise their effect on quality of life – now, and into the future.

Rheumatic diseases can affect children and young people in many ways. Some systemic disorders, such as jSLE and the systemic subtype of JIA, can severely impair children’s overall health and wellbeing. jSLE, for example, can cause damage to internal organs such as the kidneys and heart. Learn more about paediatric rheumatic diseases here.

However, the general lack of awareness can cause a delay before a correct diagnosis is made, and consequently, before appropriate treatment can be given. Early diagnosis and treatment are so important, which is why the Paediatric Rheumatology European Society (PReS) of healthcare professionals and the European Network for Children with Arthritis (ENCA) have jointly organised WORD Day to reach out, across the globe, to spread the WORD that children and young people get rheumatic diseases too.

Get involved with WORD Day 2019

So, how are you going to celebrate WORD Day? No activity is too small, or too crazy! Even a conversation with somebody on the train is helping to raise awareness. Here are some examples to get you going:

  • Contact your local paediatric rheumatology centre/team and see if you can celebrate the day together;
  • Contact your local hospital to see if you can have a stall in the entrance area… see if you can include the WORD Day posters on television displays, and see whether you can get onto the hospital radio;
  • Contact your local and national media (including newspapers, radio, and television stations), asking them for their help to raise awareness;
  • Contact local schools, colleges and universities to see if you can go in to give an assembly, presentation or activity with students and staff about rheumatic diseases in children and young people;
  • Contact your local museum to see if you can host a stall in the entrance, or at least leave some leaflets on the information desk;
  • Write a blog, or share a video on life with a rheumatic disease (this could be young people and/or parents and other family members);
  • Organise an information and training event around WORD Day and invite trainee doctors, nurses, physiotherapists and occupational therapists to help them better understand rheumatic diseases, as early intervention is the key to better outcomes for children and young people;
  • Organise a coffee morning in work to raise awareness over a cuppa and some cake!

You can also get involved in the WORD Day social media challenge – the #buttonchallenge2019:

If you would like to get involved in WORD Day, or if you want any more information, please contact the WORD Day Organising Committee on worldyoungrheumaticdiseaseday@gmail.com.

Connect on social media

Help to create some noise on social media, by following and engaging with WORD Day on Facebook: @WORDDay2019 and Twitter: @WORDDay2019.

Download some resources

The WORD Day Organising Committee have prepared a variety of resources for people and organisations to use. Download them, be creative, and get the message out there!

Help to spread the WORD that children and young people get rheumatic diseases too!

Written by simonrstones

Simon R. Stones BSc (Hons) is a multi-award winning patient advocate, consultant and researcher from Bolton in the United Kingdom. He was recognised in 2019 as one of the top 100 most influential people with disabilities in the UK, and was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in 2017. He is a passionate advocate and ambassador for people living with chronic conditions and invisible illnesses, inspired and empowered by his own journey with juvenile arthritis, fibromyalgia, and inflammatory bowel disease since childhood, as well as a carer for his mother. He is currently an Associate Fellow of the Royal Commonwealth Society, a trustee of Fibromyalgia Action UK and RAiISE, board member of the European Network for Children with Arthritis (ENCA) and President of the European Network of Fibromyalgia Associations (ENFA).

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