According to a story from Yahoo News, there’s no denying that the coronavirus/COVID-19 pandemic is an unprecedented experience for millions of people around the world. However, it can be especially challenging for people living with a rare disease or a chronic illness, who already have trouble navigating the health system to get what they need even in the best of times.
Rare Disease and COVID-19
A large portion of the rare disease community is already familiar with some of the day to day aspects of the pandemic, such as self-isolation and taking extra precautions. This is especially true for rare diseases that compromise the effectiveness of the immune system. However, many of the difficulties that these patients deal with on a regular basis, such as access to medical professionals and effective treatment, have only been made far worse.
The Mighty and Global Genes have been asking rare disease patients about the biggest challenges they have faced during the pandemic. Some of the most common issues were concerns about going to appointments safely, fears about going to the ER for disease flares, and anxiety about the COVID-19 disease itself, as many patients are at an increased risk.
Rare Workers Are Especially at Risk
A major concern during the coronavirus/COVID-19 pandemic has been the treatment and safety of essential workers, such as grocery store employees and others. While many companies claim they are doing everything they can to make sure that there workers are safe, the workers themselves often have quite a different story to tell. These stories involve slow responses, refusal to supply masks and other protective gear, and insufficient sanitation of work spaces. Because of this carelessness, thousands of essential workers have been getting infected. Now imagine working in one of these environments and having a rare illness that could put you at greater risk. Patient Nancy H.R. had this to say:
“I work at a grocery store. I already had my hours reduced to less than 20 a week due to my health. Now I’m only working one or two days; it’s not enough to get extra (hazard) pay. So I’m actually making less money to put myself at a higher risk. There are still so many customers that aren’t getting it and I don’t feel safe. “
Check out more patient responses on this Facebook post from Global Genes.
