As of 1/6/2023. All information contained is provided with input from physicians on the NGF Medical Advisory Board.
Medical understanding of SARS-CoV-2, the novel coronavirus that causes COVID-19, is evolving. To maintain your optimal health, follow your local guidance and CDC COVID-19 recommendations.
A Word of Caution About COVID-19 Information
Any government agency or organization website—including this one—provides only general information. Not all of this information will apply to you. Your Gaucher specialist is the best person to advise you.
Every Gaucher patient needs an individualized care plan, not only for GD, but for all other concurrent illnesses, including COVID-19. Your treating physician can discuss your individual risk and tailor risk-reduction strategies to your needs.
You should continue all treatments and medical management of lysosomal disorders, including Gaucher disease. Before making any changes to your medical regimen, or if you need care for COVID-19-related illness, seek advice from both your Gaucher specialist and your primary care provider (PCP).
Gaucher Disease and COVID-19 Risk
So far, there is no evidence that Gaucher disease itself raises your risk of getting COVID-19 or having a bad outcome if infected.
Molecular Genetics & Metabolism published an article in August 2021 titled The clinical spectrum of SARS-CoV-2 infection in Gaucher disease: Effect of both a pandemic and a rare disease that disrupts the immune system. It is a retrospective analysis from March 2020 – March 2021 of 11 individuals who have GD type 1. As indicated in the abstract, “the case series suggests that GD patients acquired COVID-19 at a similar frequency as the general population, though experienced a milder overall course despite harboring underlying immune system dysfunction and other known co-morbidities that confer high risk of adverse outcomes from SARS-CoV-2 infection.”
There is also no evidence that GD or its treatments protect from SARS-CoV-2 infection or from associated complications, including death. You should continue to take precautions, follow COVID-19 prevention tips, and receive the COVID-19 vaccine, if so advised by your physician.
What we know about Gaucher patients with COVID-19
Like people without GD, most, but not all, Gaucher patients who have tested positive for COVID-19 have had mild to moderate symptoms and did not require hospitalization before recovery.
To date, many Gaucher patients, like those without Gaucher, who have developed more severe COVID-19 symptoms had other co-morbidities known to increase the severity of COVID-19. Those conditions include obesity, hypertension, cardiac conditions, or diabetes mellitus.
What we don’t know
We do not know how many GD patients have been infected with SARS-CoV-2 but haven’t had signs or symptoms. As with all other individuals, asymptomatic Gaucher patients may spread the virus to family members and others.
For anyone exposed to and infected with SARS-CoV-2, including those with GD, we still cannot accurately predict who will get serious or even fatal disease. For more information about your risk, speak to your doctor.
Gaucher and COVID-19 Variants
The SARS-CoV-2 virus continues to mutate (change). All viruses mutate to increase their chances of survival. Viruses can mutate faster when they infect more hosts.
Scientists have identified many new strains of SARS-CoV-2 originating around the world. Currently, the Omicron variant and its subvariants are the predominant strains in the United States and other countries. The Omicron variant spreads more easily than the Delta variant and people who are infected with Omicron can spread the virus to others, even if they are vaccinated or don’t have symptoms.
Current vaccines provide significant protection against severe illness, hospitalizations, and death due to an Omicron infection. However, breakthrough infections with the Omicron variant are likely to occur in many who are fully vaccinated, including people who received one or more boosters. People who are up to date with their COVID-19 vaccinations and are infected with Omicron have more protection and are less likely to experience serious illness than those who are not vaccinated.
Patients with GD should continue to follow the current local recommendations for masking, social distancing (even from vaccinated individuals), and restricted travel. As with any other question relating to your health, your best resource is to contact your PCP and Gaucher specialist.
Key Information About Gaucher Disease and COVID-19
Get the facts about COVID-19, the disease caused by the novel coronavirus, discover how Gaucher disease impacts your risk, and learn what you can do to protect yourself and others.
People with COVID-19 may experience a variety of symptoms, from mild to severe. According to the Centers for Disease Control and Prevention (CDC), potential symptoms of COVID-19 infection include:
- Fever or chills
- Breathing trouble or shortness of breath
- Muscle aches
- New loss of smell or taste
- Sore throat
- Congestion or runny nose
- GI symptoms such as diarrhea, abdominal pain, nausea or vomiting
As variants continue to evolve, which symptoms occur most frequently may change. For example, Omicron and its subvariants are less likely to cause loss of smell or taste. Vaccination status also affects symptoms. For example, people who received at least two doses of a COVID-19 vaccine are less likely to have a fever from COVID-19 but more likely to experience sneezing as a symptom.
Some symptoms are an emergency
Call 911 if you develop:
- Difficulty breathing
- Persistent chest pain or pressure
- New confusion or inability to become alert
- Trouble waking up or staying awake
- Bluish, pale, or gray lips or face
COVID-19 complications in children and young people
In the United States, a small number of children with COVID-19 have presented with multisystem inflammatory syndrome in children (MIS-C) – 9,139 since the beginning of the pandemic through November 28, 2022. Of these cases, the median age was 9 years with half of the cases occurring in those between the ages of 5-13 years.
This childhood inflammatory disease, which has similarities to Kawasaki disease, may be due to SARS-CoV-2 infection. Some children developed MIS-C despite not having any COVID-19 symptoms.
MIS-C may occur days to weeks after COVID-19 illness. Some children developed severe heart and multiple organ complications necessitating intensive care. If you think your child has signs of severe illness, call 911 or your pediatrician right away. Learn more about MIS-C.
While most people recover from COVID-19 after a few weeks, some people can have long-lasting and serious effects, including heart inflammation (myocarditis). These ongoing symptoms are often referred to as Long COVID, post-acute COVID or long-haul COVID.
According to a November 2022 report from the Department of Health and Human Services, 5% to 30% of people who contracted COVID-19 developed Long COVID. Preliminary data shows that vaccines reduce the risk of developing Long COVID but do not prevent it entirely. The best way to prevent developing Long COVID is to avoid getting COVID-19.
Post-viral illness is not new. Long-term symptoms are known to occur after a variety of infections, including Ebola, Epstein-Barr virus (EBV), flu, and polio. Infections are suspected to be a common trigger for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Up to 50% of people with Long COVID also meet the criteria for ME/CFS diagnosis.
Long COVID can affect anyone, including people who had very mild symptoms of COVID-19. If you develop Long COVID, pacing is key. Pushing too hard can make Long COVID symptoms worse. Learn more about pacing. Talk to your doctor about your risk or any ongoing symptoms following illness with COVID-19.
Long COVID symptoms
People may experience a continuation of the symptoms they had while acutely ill, or they may develop new symptoms after the acute infection. More than 200 symptoms in at least 10 organ systems are associated with Long COVID. Researchers suspect there are different subtypes of Long COVID based on different symptom clusters.
A study by University College London researchers and patient researchers from the Body Politic support group found that the top 3 most frequent symptoms are:
- Post-exertional malaise (worsening of symptoms after physical or mental exertion)
- Cognitive dysfunction (brain fog)
Learn more about Long COVID symptoms.
According to the World Health Organization (WHO), COVID-19 spreads through person-to-person contact (droplet transmission) and aerosols (airborne transmission). When an infected person coughs, sneezes, or talks, they produce respiratory droplets that can spread the virus. The virus also spreads through aerosols, tiny particles that can remain in the air for hours. In poorly ventilated spaces, infectious aerosols may remain long after the infected person leaves the room.
Rarely, the virus may spread via contaminated surfaces, especially if people touch their faces after touching a surface. Learn more about how COVID-19 spreads.
Tips for preventing COVID-19
The best way to prevent the spread of the virus is to limit contact with infected people. Some people become infected but never show symptoms, so everyone should follow these guidelines:
- Stay up to date with COVID-19 vaccines and boosters.
- Avoid the 3 Cs: crowded spaces, close-contact settings, and confined spaces.
- Wear a high-quality, well-fitting mask that covers your mouth and nose. Respirators rated N95 or higher and elastomeric respirators provide the most protection.
- Avoid close contact with people who are sick.
- Use air purifiers to clean the air and open windows to improve ventilation indoors.
You should also follow best practices for hygiene and infection prevention:
- Wash your hands often with soap and water for at least 20 seconds.
- Use hand sanitizer that contains at least 60% alcohol if soap and water are not available.
- Avoid touching your face.
- Clean and disinfect frequently touched surfaces.
If you are sick:
- Stay home.
- Cover your coughs and sneezes with a tissue.
- Inform your doctor, especially if you experience symptoms of COVID-19.
Risk factors for severe COVID-19 illness
Based on what we know so far, most people with Gaucher disease, without other underlying conditions, do not appear to be at higher risk of severe COVID-19-related illness. However, talk to your Gaucher specialist about how to protect yourself if you have any of the following GD-related conditions or other risk factors:
- Lung, kidney, liver, or spleen involvement
- Splenectomy (surgical removal of your spleen)
- Immunodeficiency (weakened immune system)
- Lack of mobility because of severe bone disease
- GD and Parkinson’s disease
General risk factors
In the general population, people at higher risk of severe illness from COVID-19 include those who:
- Are age 65 or older
- Live in a nursing home, group home, or long-term care facility
- Have underlying medical conditions
Other conditions that increase risk
You may fall into a higher risk group if you have Gaucher disease and other serious risks. Talk with your doctor if you have additional conditions, including, but not limited to:
- Chronic heart, lung, liver, or kidney disease
- Clotting problems
- Hypertension (high blood pressure)
- Immunocompromising conditions or weakened immune system
- Mental health conditions
- Moderate or severe asthma
- Neurological conditions
- Obesity (BMI greater than 30)
- Organ transplant
Visit CDC’s pages on people at higher risk to learn more.
Gaucher disease treatment during the COVID-19 pandemic
It is important to continue managing your condition despite the disruptions caused by the pandemic. Here are some tips for safely maintaining your Gaucher care:
- Discuss your unique situation with your Gaucher specialist. Your specialist can answer your questions and may help set your mind at ease. Your doctors can help make sure you’re getting the care you need.
- Review your medications with your Gaucher specialist. Also discuss your medications with any other doctors who prescribe medications for you. Discuss your medications at every visit and whenever your health or medical conditions change.
- Continue treatment, as recommended by your Gaucher specialist. Staying on treatment is the safest way to control Gaucher disease.
- Use telehealth appointments rather than in-person visits whenever possible.
Enzyme replacement therapy (ERT)
Continuing ERT is safer than stopping it, even during the pandemic. The main risk with ERT is potential exposure to coronavirus when you receive your infusion. You can take steps to minimize your risk of exposure:
- Wear a well-fitting, high-quality mask covering your mouth and nose.
- Ensure staff providing infusions wear personal protective equipment (PPE).
Substrate reduction therapy (SRT)
Continue taking SRT unless your doctor tells you otherwise. The main risk from SRT is potential interactions with other medications. Tell any medical providers about all medicines you take. Eliglustat (Cerdelga®) interacts in various ways with many medications. Doctors should carefully assess potential interactions before prescribing:
- Certain pain medications
- Remdesivir, an antiviral used for COVID-19
Before taking any other medication, make sure your doctors know you are taking Eliglustat (Cerdelga®). Have them contact your Gaucher specialist to discuss the possibility of taking a break from Eliglustat (Cerdelga®) until you don’t need the other medications.
If you need to seek urgent care for COVID-19
Any medical professionals providing urgent care for COVID-19 need to know about your underlying conditions. Here are four steps you can take to educate healthcare providers about Gaucher disease:
- Inform any doctors or other healthcare providers—whether outpatient, emergency room, or hospital—that you have Gaucher disease.
- Bring basic patient information with you.
- Provide contact information for your Gaucher specialist.
- Insist that any physician who is caring for you and who is not familiar with Gaucher disease call a Gaucher expert to discuss your case.
Additional Coronavirus Resources for Gaucher Patients
Gaucher disease is one of many factors that uniquely affect your health. Seek advice from your Gaucher specialist as well as your PCP. Other resources that may interest you include:
- COVID-19 Vaccine Information for Gaucher Patients
- What precautions should people with Gaucher disease take?
- Coronavirus glossary
- CDC – Health Department-Reported Cases of Multisystem Inflammatory Syndrome in Children (MIS-C) in the United States – https://covid.cdc.gov/covid-data-tracker/#mis-national-surveillance
- CDC – People with Certain Medical Conditions – https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html
- eClinical Medicine – Characterizing long COVID in an international cohort: 7 months of symptoms and their impact – https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00299-6/fulltext
- MedlinePlus – Post-COVID Conditions (Long COVID) – https://medlineplus.gov/postcovidconditionslongcovid.html
- Prevention – The Most Current COVID Symptoms in 2022, According to Experts – https://www.prevention.com/health/a42243112/current-covid-symptoms-2022/
- Verywell Health – Your COVID-19 Symptoms May Vary Based on How Many Shots You’ve Had – https://www.verywellhealth.com/covid-symptom-data-after-vaccination-6824770
- World Health Organization – Coronavirus disease (COVID-19): How is it transmitted? – https://www.who.int/news-room/questions-and-answers/item/coronavirus-disease-covid-19-how-is-it-transmitted