Amid the stream of troubling news surrounding the COVID-19 pandemic, rare disease advocate Patricia Weltin saw an opportunity to provide a bit of comfort.
Weltin is the mother of two daughters living with rare conditions and founder of Beyond the Diagnosis, a traveling art exhibit featuring portraits of kids with rare diseases. After watching a long day of news about the pandemic, Weltin wrote on social media that her thoughts turned to the mail carriers and delivery workers who were still on the job. She decided to post Beyond the Diagnosis portraits on her door to raise their spirits.
“A guy from the water department was at the house replacing something outside,” she wrote. “He said he noticed the portrait right away and said ‘God bless you.’ Art heals the soul!”
Weltin is also planning a series of “Gallery Nights” on the Beyond the Diagnosis Facebook page, which will feature livestreamed discussions between artists and patients featured in the exhibit.
Weltin is among a number of advocates and patients who have sought to give their community a voice during the crisis.
Blogger and activist Adam Hayden, who is living with glioblastoma, a rare and aggressive form of brain cancer, argued in an opinion piece for Stat that public efforts to “flatten the curve” of coronavirus could take lessons from the approach developed by those living with rare and serious conditions.
“These include advocating for the community, using precautions responsibly, following evidence-based interventions, and embracing a virtual culture,” he wrote.
The abrupt shift in daily life to a socially distanced existence has been a challenge for much of the public, but for some patients living with compromised immune systems, it’s all too familiar.
Snow Companies, which CSL Behring has worked with to tell patient stories, enlisted chronic disease patients to deliver a powerful and important video message to encourage people to adhere to public health guidelines and potentially save lives in the process.
For more information on what advocates and patient groups are doing in response to the COVID-19 pandemic, please check out our roundup of coronavirus articles here.