Keeping it Local: Facebook Group Focuses on Australians with Kawasaki Disease
Since 2015, Australians have gathered on Facebook to share information about treatment options and government policies for this rare disease.
Kawasaki disease (KD) is a rare illness that typically develops in early childhood. Initial symptoms include fever, rash, oropharyngeal and extremity changes, bilateral bulbar conjunctival injection, unilateral cervical lymphadenopathy, and high fever. People with KD have the potential to develop coronary artery aneurysms, so they are at risk for sudden death. KD is the leading cause of acquired heart disease in children in developed countries and is a risk factor for ischemic heart disease in adulthood. KD has no known cure, but two treatment options reduce inflammation of blood vessels: high doses of aspirin every six hours during flare-ups and intravenous gamma globulin.
Although cases of KD have been diagnosed in over 60 countries, the number of diagnosed cases of the disease is quite low. The rate of incidence of KD in the continental United States is approximately 25 cases per 100,000 children under five years of age. In Japan, with the highest number of cases, the incidence is estimated to be about 250 cases per 100,000 children under five years of age. While there are over 30 groups on Facebook focusing on KD, only a handful of these groups are country-specific.
One such group, Kawasaki Disease Australian Network, was created in March 2015 “to broaden access to support for people that had been impacted by KD in Australia,” according to the group’s “About” page. This Australian community currently has 384 members, and a few members are added each week.
The group has four admins and no moderators. Three of the admins are volunteers for the KD Foundation Australia, and one admin is the public advocacy page “Kawasaki Disease Australia.” A representative of this account described the evolution of the community in a Facebook Messenger interview: “we had previously communicated with the KD community via an email mailing list and had a small website with information too.” The community understood that as technology advanced, communication methods within the group needed to be updated to stay relevant. The admin noted, “As Facebook became a more widely used engagement platform, we wanted to trial it as an alternative method for connection, support, and sharing information with our local KD community.” The admins of Kawasaki Disease Australian Network joined other KD Facebook groups and liked the support aspects of the community. However, one admin described in a Facebook Messenger Interview that the existing groups “weren’t specific to the needs of the Australian KD community and some of the advice and health care suggestions were not the same as what occurs in Australia.”
Kawasaki Disease Australian Network was formed as a private Facebook group because the admins “wanted to create a supportive environment where people could connect with others that were more local and where sharing of information related to health care provision in our own country” could occur. The group went from a trial to today’s ongoing community “and continues to be a major point of connection and support for KD families in Australia,” a representative from Kawasaki Disease Foundation Australia said.
Since 99% of the members are located in Australia, “the mission of the community is focused on advice and information [regarding] how the medical system operates and the follow-up care” that is unique to Australia, the admin said. The admin added that Kawasaki Disease Australian Network works “to ensure that information is factually correct, based on the Australian health care setting, and therefore tailored to our local community, without having to moderate and filter out incorrect information. This hopefully helps to avoid misinformation being shared by members and reduces parental anxiety regarding KD care/treatment/follow up.”
Kawasaki Disease Australian Network has a corresponding Instagram account that focuses on raising awareness about KD. This account showcases pictures of children, with their first names, their specific diagnosis, and age at diagnosis. A child’s photo is accompanied by a caption written by the child’s parents, who describe their journey to their child’s diagnosis.
Many of the Instagram posts have a similar red border and KD Foundation Australia’s logo of a big heart. There are also posts that highlight facts about the rare disease throughout the month of January, leading up to KD Awareness Day on January 26.
Kawasaki Disease Australian Network hosted its first-ever webinar, KDAU and You, on January 23, 2021. This webinar, hosted by Australian KD specialists, presented information on treatment options and long-term care and included a Q&A session with the specialists.
In a Facebook Messenger interview, one admin noted, “We, unfortunately, don’t have the time to moderate a group that has thousands of members and is manageable for us with smaller numbers as we are a very small team, and all have other work/family/personal commitments.”
