RDR: Flu Season Requires Special Precautions for Rare Disease-Affected Individuals

January 20, 2017

Thanks to the Rare Disease Report for this piece.
Some might think that flu season peaks with the busiest time of the year, in November and December. The truth is, flu season is long—from October all the way through May—and February has the highest instance of flu cases across the United States. For those with rare diseases, it’s particularly critical to protect oneself against the viruses that can wreak havoc on the respiratory, digestive, and immune systems.
Protecting the respiratory system is especially critical. If you have congenital muscular dystrophy (CMD) or are in close contact with someone who does, you know that breathing may be more difficult for those with the disease. As described on the Cure CMD website, people with CMD can have challenges breathing because expansion of the chest is limited by weakness in the diaphragm and chest wall muscles, contractures in the joints between the ribs and vertebrae, and scoliosis in the spine. Such limitations reduce the amount of air that can be inhaled, and the decreased inhalation/exhalation causes carbon dioxide levels to build up. This leads to hypercapnia, or high carbon dioxide levels, which can then lead to low oxygen levels, or hypoxemia
Yet preventing the flu—and associated symptoms such as fever, cough, sore throat, runny or stuffy nose, body aches, chills, and fatigue—is as simple as one, two, three. The Center for Disease Control (CDC) offers three simple steps to protect oneself and others from influenza (more commonly, the flu. See more at
1.     Get your flu vaccine! It’s important that NMD-affected individuals receive the actual shot (yes, the needle kind—but don’t worry, though your arm may briefly be sore afterward), not the nasal spray kind of vaccine. If you have a rare disease, it’s important that you and your caregiver are properly vaccinated. And remember, it takes up to two weeks for the shot to take full effect.
2.     Take preventative actions to stop the spread of germs. Avoid close contact with sick people, and make sure the people around you have gotten their flu vaccine. Cover your nose and mouth with a tissue when you cough or sneeze, and throw the tissue away when you’re done with it. Avoid touching your eyes, nose, and mouth—this is how germs spread. And of course, remember to wash your hands often with soap and water.
3.     Take flu antiviral drugs if your doctor prescribes them. Even if you get sick, such drugs can reduce the severity of the illness.
It’s ideal to get your shot at the end of September, but it doesn’t hurt to get it mid-season. Better a sore arm for a couple days than a week (or more) of being bed-ridden—or hospitalized. Sarah Foye, Digital Ambassador for the Center for Disease Control’s Flu Vaccination Awareness Initiative and mother of a child with a rare congenital muscle disorder, says, “The year my son got the flu, he missed 63 days of school. He was miserable and it was so disruptive for our whole family for months.  That is why I volunteer as a CDC Digital Ambassador and encourage people to get vaccinated. As my mom always said, ‘An ounce of prevention is worth a pound of cure.’”
Cure CMD offers more critical advice on how to get through flu season—including information about why supplemental oxygen is not the first treatment you should reach for when ill—in this video on the organization’s YouTube channel. It can also be seen below.  Check it out and stay healthy this season!

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