At Parent Project Muscular Dystrophy, patient families have been contacting the organization by phone, email, and online messages seeking guidance for what people with Duchenne muscular dystrophy should do in the face of the COVID-19 pandemic.
Many patients with Duchenne muscular dystrophy use corticosteroids to slow progression of their condition. One problem, though, is that these medicines weaken the immune system. Patients also face cardiovascular and respiratory problems, which can make them more vulnerable to developing serious problems if they become infected with COVID-19.
“We have tried to stay in close contact with the community and the CDC. We are preaching, ‘avoid crowded places and minimize exposure,’” said Rachel Schrader, senior vice president of clinical care for Parent Project Muscular Dystrophy and a nurse practitioner. “So far so good, but this is something rapidly evolving every day.”
Parent Project Muscular Dystrophy, like many other rare disease organizations, are telling patients to follow the guidelines from the U.S. Centers for Disease Control and Prevention for steps people with serious chronic medical condition should take in response to the COVID-19 outbreak because of the higher risk of getting very sick from the illness.
In additions to precautions, such as avoiding touching your face, eyes, and nose, CDC recommend washing your hands often for at least 20 seconds, routine cleaning and disinfecting of your home; and avoiding contact with door handles, handrails, elevator buttons, and other high-touch surfaces in public place.
For people who have chronic medical conditions, the guidelines recommend they should avoid crowds, stay away from people who are sick, and forgo non-essential air travel. Oh, and forget about that cruise for now.
If there is a COVID-19 outbreak in your community, the CDC advises people to take additional precautions to prevent exposure. This includes staying at home as much as possible and getting food brought to your home through commercial services, family, or friends.
It also encourages people with chronic medical conditions to have a plan ready before you get sick or an outbreak occurs in your community. For instance, in the case of Duchenne muscular dystrophy, patients who become infected may need to increase their steroid dosage and should they become ill.
In fact, the CDC recommends that people with chronic illnesses should contact their health providers to get extra medications to have on hand in case of an outbreak that requires them to stay home for prolonged periods of time. It’s also a good idea to have over-the-counter medicines and things like tissues on hand to treat fever and other symptoms. Most people will be able to recover from COVID-19 at home.
The Cystic Fibrosis Foundation has prepared a FAQ to address concerns it has heard from its community regarding the coronavirus outbreak. Others, such as Parent Project Muscular Dystrophy, are taking advantage of their existing network of doctors.
In 2014, Parent Project Muscular Dystrophy started its Certified Duchenne Care Centers to develop comprehensive standards and services working with the CDC. There are now 28 centers running with multidisciplinary teams. As a side benefit, this has given the organization access to not only cardiac and pulmonary specialists, but epidemiologist and infectious disease experts.
Already the rare disease community is feeling the impact of COVID-19 by its disruption to travel and conferences. A number of rare disease related conferences have been canceled or postponed as people seek to avoid travel and large gatherings.
On March 10, the Everylife Foundation for Rare Diseases and Global Genes, the publisher of Rare Daily, announced they would postpone their Rare on the Road events in Raleigh, North Carolina on March 28 and in Burlingame, California on April 17th. “We have made this decision out of an abundance of caution regarding COVID-19, and to prioritize the health and safety of our event attendees,” the organizations said in an email.
They hope to reschedule those events during the summer and are moving forward with other events in May and June.