Information About COVID-19 for Batten Disease 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 and highly contagious pathogen not previously seen in humans. Though it belongs to the same category of viruses as SARS 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. Based on available evidence, scientists think the virus spreads primarily via respiratory droplets when people talk, cough, or sneeze.

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 pain, 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, it is estimated that about 15% become seriously ill and develop breathing difficulties, and 5% become critically ill and require intensive care. Symptoms of serious COVID-19 include shortness of breath, loss of appetite, and pain or pressure in the chest. 

People over the age of 60 and those with underlying medical conditions such as diabetes, heart and lung issues, cancer, and high blood pressure are most at risk of becoming seriously ill.

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.

What extra precautions should Batten disease patients take?

There is no evidence to suggest that individuals with Batten disease are at a higher risk of contracting COVID-19, but some patients may be more prone to complications from the virus. This includes those who get recurrent chest infections, are tube fed, or have difficulty swallowing.

Batten disease patients should take extra precautions to minimize the risk of getting COVID-19. In addition to the general preventive measures listed above, caregivers and patients with Batten disease 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.

What should sick individuals do?

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

• Stay at home, preferably in a separate room not shared with others, and isolate yourself, 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.

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 healthcare 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. Another vaccine, by Johnson & Johnson, also recently received emergency use authorization.

Elsewhere, China-based Sinovac’s vaccine, CoronaVac, has received authorization for use in several countries, including China, Singapore, Malaysia, the Philippines, and Turkey. SingPharm also has a vaccine that is approved for use in the United Arab Emirates and Bahrain. The U.K., European Union, and Canada have all approved AstraZeneca’s vaccine, developed in partnership with Oxford University. 

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: April 30, 2021

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Batten Disease 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.