World Arthritis Day, Chilean Experience: Five reasons to join this initiative

World Arthritis Day, celebrated worldwide on October 12, was created in 1996 by Arthritis and Rheumatism International (ARI) and was promoted by the European League Against Rheumatism (EULAR), with the purpose of raising awareness by communities and authorities, as well as providing assistance and support to patients and their families (www.worldarthritisday.org).

This date has been commemorated in Chile for several years, growing in importance and attention.

This year, the Chilean Rheumatology Society (SOCHIRE) organized the First Day for groups of patients with rheumatology disorders, held during the XXX Chilean Congress of Rheumatology, during which different health professionals presented and interacted with all patient organizations: Corporación Volar, Agrupación Lupus Chile, Fundación Me Muevo,Vasculitis Chile and Espondilitis Chile. This scientific event gave way to activities during Arthritis Awareness Month.

During World Arthritis Day several activities were held with the support of SOCHIRE, duly organized by patient organizations, such as the “First Day for patients with juvenile arthritis”, directed by ANACROJ, and the “Chile, Múevete a Tiempo” campaign, by Fundación Me Muevo.

What are the reasons to promote such an initiative?

1. Our work is centered around the patient

As scientific societies, it is our job to promote development of the specialty, university education and research. However, the focal point of our work are patients. Progress in knowledge serves no purpose if it does not reflect on patient well-being. One way of managing this is through events such as these, which bring together patients and families under the concept of education. Additionally, celebrating this day creates awareness in media, allowing us to reach communities in order to become a well-known specialty.

2. Society demands a new way of communication

Changes promoted by social movements have put us on a horizontal relationship with organized and empowered patients, which urge us to develop our full communication capacities and to joint decision-making in clinical practice.

We work with patients and their families, promoting organization and support networks, enhancing visibility for their conditions in society, supporting petitions to health authorities and learning from their experiences and knowledge.

We are privileged to have representatives from organizations whose informed, responsible and serious efforts have transformed them into opinion makers in the national (in the discussion of draft bills for high cost pharmacological treatment and as advisers in draft clinical guides for disease handling) and international (one of their directors was invited as a speaker by 2015 PANLAR Review Course in Colombia) scene.

Sra. Ximena Romo de Vasculitis Chile y Sr. Gonzalo Tobar de Lupus Chile presentando en Comisión de Salud del Senado.

Srta. Cecilia Rodríguez de Fundación Me Muevo, presentando en Panlar Review Course en Colombia y en Seminario Farmacéutico en Chile, año 2015.

3. Strength through unity

SOCHIRE and patient organizations seek the same purpose: the welfare of patients. This is achieved through close-knit work.

When patients realize the existence of support networks made up of health professionals and people with the same conditions, they feel accompanied in their daily struggle against the disease. Many are motivated to belong to patient organizations, thereby strengthening their presence in society. Therefore, we have incorporated the slogan of the Spanish patient organizations: “Our formula is to add efforts”.

4. We love challenges

An activity involving so many actors shall balance the just aspirations by each participant and provide a space for expression, thereby reinforcing the message that none is greater than other.

All are listened to and supported.

Along the years, through regular meetings, we have had the opportunity to humbly learn from our own mistakes and return to the task jointly and stronger.

5. We are going further

We are pleased with our activities. The group organizing it works with enthusiasm and constant new and brilliant ideas, which we strive to make come true.

We would like to involve more people and have even greater outreach. There is much to do still.

I thus invite you to join the World Arthritis Day campaign as members of PANLAR, jointly with organized patients, in order to make early diagnosis and timely treatment for our children and adults a reality throughout the continent.

Dr. Lilith Stange

Rheumatologist – Clínica del Mar

Local Committee President – XXX Chilean Rheumatology Congress