WOrld young Rheumatic Diseases Day (WORD Day) is an annual international awareness day that takes place on March 18th each year. The aim of WORD Day is to first raise awareness of all the different kinds 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 prompt referral to specialist paediatric rheumatologists.
To help celebrate WORD Day for 2021, two interactive webinars have been planned with an international panel of paediatric rheumatology experts (including young people, parents/carers, healthcare professionals, and researchers). Everyone is welcomed to join, with further details below.
WORD Day Webinar Part 1: Ask the experts – Living with a paediatric rheumatic disease
Thursday 18th March 2021, 19:00 CET
Paediatric rheumatology experts will gather to address pressing questions on key symptomatic red flags, diagnosis, treatment options, and daily self-management activities which can contribute to a long and healthy life with a rheumatic disease.
WORD Day Webinar Part 2: Spotlight on parents of/and young patients with rheumatic diseases
Saturday 20th March 2021, 18.00 CET
Young people and their parents/carers will take centre stage during this webinar, which aims to highlight the challenges and experiences that young people and their families face on a daily basis, and how these can inform the way in which future research is conducted to improve their quality of life.
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 conditions 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, as well as impacting the entire family too. Some widespread 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. You can learn more about paediatric rheumatic diseases here. There are also specific resources for nurses here at pmm-nursing.
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 and Autoinflammatory Diseases (ENCA) launched WORD Day in 2019 to reach out, across the globe, to spread the WORD that children and young people get rheumatic diseases too. Please get involved and spread the WORD amongst your colleagues and contacts!