Information About COVID-19 for Sanfilippo Syndrome Patients

COVID-19, short for coronavirus disease 2019, is an infection caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), a newly identified pathogen not previously seen in humans and highly contagious. Though it belongs to the same category of viruses as SARS coronavirus and influenza viruses, SARS-CoV-2 is a different strain with its own characteristics. 

COVID-19 was first reported in Wuhan, China, in December 2019, and the outbreak spread quickly across the world, prompting the World Health Organization (WHO) to declare a pandemic.

How does COVID-19 spread?

Because COVID-19 is a new virus, nobody has prior immunity to it, meaning the entire human population is prone to infection.

It primarily spreads via respiratory droplets when people cough or sneeze. Based on available evidence, scientists think the virus is most commonly spread through close contact rather than airborne transmission, but research is still ongoing to understand the exact nature of COVID-19 and its spread.

Individuals over age 60 are at the highest risk of developing a severe case of COVID-19, while children do not seem to be at a higher risk than adults.

What are the symptoms of COVID-19?

Common symptoms of COVID-19 begin two to 14 days after exposure. They include fever, tiredness, and dry cough. Other symptoms include loss of taste or smell, nasal congestion, sore throat, muscle and joint pan, chills, vomiting, nausea, and diarrhea. 

Most of these symptoms are usually mild, and about 80% of people who get the virus will typically recover without needing any special treatment.

However, about 1 in 6 patients become seriously ill and develop breathing difficulties. Symptoms of serious COVID-19 include shortness of breath, loss of appetite, and pain or pressure in the chest. 

What general preventive measures should people take?

The following simple preventive measures can help minimize the spread of COVID-19: 

  • Always wear a mask that covers your mouth and nose when in public.
  • Observe proper social distancing. Keep at least 6 feet (1.8 meters) of space between you and other people.
  • Wash your hands often with soap, lathering both the front and the back of the hands and fingers for at least 15 to 20 seconds. If soap is not available, use a hand sanitizer that contains at least 60% alcohol. 
  • Avoid close contact with someone who is ill. 
  • Stay at home if you are sick.
  • Use a tissue to cover your mouth and nose if you cough or sneeze and dispose of it properly afterward.
  • Disinfect surfaces and objects you touch frequently. 
  • Avoid touching your eyes, nose, and mouth with unwashed hands.

Should Sanfilippo syndrome patients take extra precautions?

It is not yet known exactly how COVID-19 affects certain populations, but there is no evidence so far that Sanfilippo syndrome patients are at a higher risk of contracting it. However, because respiratory issues are common in Sanfilippo patients and COVID-19 may trigger respiratory tract infections, patients and their caregivers should take extra precautions to minimize the risk of getting the virus. 

In addition to the general preventive measures listed above, patients and caregivers should: 

  • Stock up on necessary medications and supplies that can last for a few weeks.
  • Avoid crowds and non-essential travel.
  • Stay at home as much as possible.
  • If you are a caregiver, have a plan in place for care in the event you become sick.

Caregivers should constantly monitor patients and themselves and contact their doctors if any COVID-19-like symptoms are present.

What should sick individuals do?

If symptoms are present or a COVID-19 diagnosis is confirmed, patients should take the following steps to prevent the spread of infection:

  • Stay at home, preferably in a separate room not shared with others, and isolate themselves, with the exception of getting medical care. 
  • Avoid public areas and public transport.
  • Wear a mask if you have to be around people.
  • Limit contact with pets and animals.
  • Avoid sharing personal items.
  • Cover coughs and sneezes with tissues and dispose of them properly.
  • Sanitize hands regularly. 
  • Disinfect surfaces such as phones, keyboards, toilets, and tables.

People should call ahead before visiting a healthcare facility for an appointment. This way, the staff can take necessary steps to prevent the spread of the infection.

What tests are available?  

Many tests to detect COVID-19 are now available under the U.S. Food and Drug Administration’s emergency use authorization, including rapid tests that can produce results within minutes.

The Foundation for Innovative New Diagnostics provides an up-to-date list of different manual and automated tests that are available or currently in development.

What about treatments and vaccines?

Several medications have been approved or authorized for emergency use by the FDA to treat COVID-19.

Antiviral Veklury (remdesivir) is the first therapy fully approved by the FDA to treat COVID-19; it is indicated for hospitalized patients 12 and older. Several monoclonal antibodies have also received emergency use authorization from the FDA for the treatment of COVID-19 in various settings, including Olumiant (baricitinab), bamlanivimab, casirivimab, and imdevimab.

The FDA has also granted emergency use authorization to two mRNA vaccines, one from Pfizer and BioNTech and  another from Moderna, with others, including one from Johnson & Johnson, coming down the pipeline.

Based on evidence to date, the FDA has said the currently approved vaccines likely pose little risk to those with a rare disease, but individuals should discuss the potential benefits and/or risks with their healthcare providers. 

More information on COVID-19 and the FDA’s response is available here.


Last updated: Feb. 26, 2021


Sanfilippo Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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