Navigating COVID-19: Information for Sanfilippo Syndrome Patients

By now, everyone has heard of COVID-19. Information is constantly being updated surrounding the nature, symptoms, spread, and potential treatments for the illness. Despite this constant influx of information, there is bound to be confusion and questions, particularly from those most vulnerable for contracting the illness.

What is COVID-19

COVID-19 is caused by SARS-CoV-2, a pathogen that has never before been seen in humans. That means we don’t know that much about it and no one has a developed immunity. However, we do know it falls in the same category as SARS and influenza.

Those most at risk for severe disease are those over the age of 60 or those with comorbidities such as Sanfilippo syndrome.

What is particularly challenging is that most symptoms are mild and so there are individuals spreading the disease when they don’t even know they have it.

But on a positive note, 80% of individuals who contract the virus will recover without hospital care. What we need to focus on, as a global society, is how to protect the 1 in 6 who will become severely ill. It primarily comes down to preventing the spread.

How to Prevent the Spread

You’ve probably heard all of this before, but lets reiterate.

  • Wash your hands for at least 20 seconds or use hand sanitizer with a high percentage alcohol
  • Social distance yourself (stay 6 feet away from others). Assume you are infected and work to not infect others
  • If you have any symptoms at all, stay home
  • Cover your coughs/sneezes
  • Disinfect your most frequently touched items/door handles/keys/phones/etc.
  • Don’t touch your face

For those with another illness, such as Sanfilippo syndrome, extra precautions should be taken. Patients and their caregivers should avoid all non-essential travel and stay at home as much as humanly possible. When they do go out, they should try to avoid crowds.

It is important to be stocked up on all essential medical supplies, including medications.

If any symptoms develop, patients should contact their doctor as soon as possible and isolate at home, except for receiving medical care. If medical care is needed, patients should call the hospital before they leave their house. When patients leave, they should wear a mask.

Potential Treatments

Just as important as it is to take the proper precautions, it is essential to stay positive and read up on the successes in COVID-19 research. There are numerous trials underway examining potential therapies. For instance, a Phase 2 trial has been initiated by the National Institute of Allergy and Infectious Diseases. Additionally, two Phase 3 trials are examining remdesivir as a therapy for patients in the United Staes. This drug has been provided by Gilead to China for free, so that they can conduct two trials of their own.

To read a full list of ongoing trials, click here.

You can read more about the recommendations for Sanfilippo Syndrome patients and updates on COVID-19 here.


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