
Key Points
- While the severity of COVID-19 infection has decreased for many people, it still can be serious for some, especially those with conditions that reduce their ability to fight infections which includes many people with Down syndrome.
- We recommend COVID-19 vaccination (including boosters) for our patients with Down syndrome based on the recommendations for COVID-19 vaccination for patients who have a reduced ability to fight infections.
- Physical distancing and wearing a mask are recommended in some situations.
- Long COVID occurs when a person has lingering or residual symptoms of COVID-19. Little is known about long COVID in people with Down syndrome.
General Information About COVID-19
The worldwide COVID-19 pandemic spread rapidly in 2020, infecting hundreds of millions and killing millions of individuals. Since then, the severity of COVID-19 infection has decreased for many individuals; however, it still can be a serious infection in others. In addition, as mutations (changes) of the virus continue, it is not known if severity will decrease or increase in the future.
COVID-19 and Down syndrome
Many people with Down syndrome have some degree of immunodeficiency (reduced ability to fight infections). This puts them at greater risk for developing infections and for having more severe cases of infections (including but not limited to COVID-19 infection).
Since the early days of the pandemic, people with Down syndrome were more affected by COVID-19 infection than those without Down syndrome. Multiple research studies have demonstrated that individuals with Down syndrome have a greater risk of more severe COVID-19 infections with more complications (see the References section below). In particular, people with Down syndrome older than 40 years of age and those with other health conditions are at high risk.
People with Down syndrome are included on the CDC’s list of conditions that increase a person’s risk for severe COVID-19.
Symptoms
Common symptoms of COVID-19 include:
- Fever or chills
- Cough
- Shortness of breath or difficulty breathing
- Sore throat
- Congestion or runny nose
- New loss of taste or smell
- Fatigue
- Muscle or body aches
- Headache
- Nausea or vomiting
- Diarrhea
Recently, some people have reported a very painful sore throat, with some calling it “razor blade sore throat.”
Severe symptoms that require emergent care can occur:
- Difficulty breathing that can progress to the need for a ventilator
- Persistent pain or pressure in the chest (COVID-19 infection increases the risk of a myocardial infarction or heart attack)
- New confusion
- Inability to awaken or stay awake
- Lips, nail beds, and skin that may appear pale, gray, or blue (depending on skin tone)
- Weakness, difficulty waking, vision changes (COVID-19 infection increases the risk of stroke)
Diagnosis and treatment
Diagnostic testing
There are many tests available to assess for COVID-19 infection. The tests typically require a nasal swab to obtain the specimen. Many tests are available for home use.
The United States Food and Drug Administration (FDA) shared recommendations for when to test in June 2025:
- Test immediately if you have symptoms.
- If the first result is negative, test again according to the time frame indicated in the test instructions (usually 1-2 days later).
- If you were exposed to someone who has COVID-19 and you do not have symptoms, wait at least 5 full days after your exposure before testing.
- The test result may be inaccurate if you test too soon after exposure.
Additional recommendations for situations in which you will be among individuals at increased risk for COVID-19 infection or will be in high-risk settings are available on the U.S. FDA website.
Treatment
Much of the treatment for COVID-19 infections consists of treating the symptoms.
Common recommendations
- Ibuprofen (Advil) or acetaminophen (Tylenol) for fever or achiness
- Throat lozenges for sore throats
- Cough medicine for coughs
Nirmatrelvir-ritonavir
Nirmatrelvir-ritonavir (Paxlovid) has U.S. FDA approval for treatment of mild to moderate COVID-19 infection. This medication should be started within 5 days of symptom onset. It is important to review medications that a person is currently taking before starting nirmatrelvir-ritonavir since it can have interactions with multiple other medications. Additionally, the dose is adjusted when nirmatrelvir-ritonavir is prescribed to those with kidney dysfunction.
Studies have shown that nirmatrelvir-ritonavir can shorten the duration of symptoms and reduce the severity of COVID-19 infection (see the References section below). However, a study published in 2024 suggested that this medication may not be beneficial for people at low to moderate risk who have mild illness and those who have been fully vaccinated. What this means for people with Down syndrome is not clear as it was not studied in people with Down syndrome.
This FDA fact sheet has more information about this treatment option.
Other treatments
Molnupiravir (Lagevrio) is another oral anti-viral medication that is available, but we have not used it in our clinic.
In this article, we will not address treatment for those with Down syndrome who are hospitalized with COVID-19.
Returning to activities
The CDC recommends waiting to return to usual activities such as work and school until the person’s symptoms have been improving for at least 24 hours and the person has not had a fever (and has not been taking fever-reducing medications) for at least 24 hours.
The recommendation includes precautions to take during the first 5 days of resuming normal activities such as wearing a mask, physical distancing, good hygiene, and testing if you will be around other people.
General prevention steps
During the pandemic, there were recommendations regarding masking, physical distancing, staying home when ill, and good hygiene. As the pandemic ended, the recommendations changed but there are still recommendations regarding preventive measures.
Masks
The CDC recommends wearing a mask if:
- There are a lot of illnesses caused by respiratory viruses in your community.
- You or the people around you had a recent exposure to a respiratory virus or if you are sick or recovering from a respiratory illness.
- You or the people around you are at increased risk for severe illness.
Physical distancing
Regarding physical distancing, the CDC states, “Putting physical distance between yourself and others can help lower the risk of spreading a respiratory virus.”
Hygiene
Good hygiene and other steps to prevent spread of COVID-19 that are recommended include: good handwashing, covering coughs and sneezes with a tissue (and throwing used tissues in the trash), and coughing or sneezing into your elbow (rather than your hand) if you do not have a tissue.
Vaccination safety, side effects, and effectiveness
Studies have demonstrated that COVID-19 vaccines are safe and effective in people with and without Down syndrome. Studies by Valentini et al. (2022) and Hüls et al. (2022) demonstrated the safety and efficacy of COVID-19 vaccines specifically in people with Down syndrome.
While COVID-19 vaccines have the potential for side effects, studies have found the risks from COVID-19 infection are generally greater than the risks of the vaccine. Myocarditis (inflammation of the heart muscle) and pericarditis (inflammation of the lining around the heart) following vaccination with mRNA COVID-19 vaccines have been reported, particularly in males without Down syndrome age 12 through 24 years of age.
However, a review of available research published in 2024 did not find reports of myocarditis or other serious side effects in people with Down syndrome. There are no data indicating the risks of vaccines outweigh the benefits in people with Down syndrome, especially when considering the higher rates of severe complications from COVID-19 infection in people with Down syndrome.
Studies by Valentini et al. (2022) and Esparcia-Pinedo (2023) showed that lab tests measuring the immune system of people with Down syndrome did not respond as well to COVID-19 vaccination. The immune response was less in people with Down syndrome than in people without Down syndrome. However, despite those findings, as noted above, studies assessing clinical effectiveness (such as disease prevention or reduction in symptom severity) did demonstrate benefit of COVID-19 vaccination in people with Down syndrome.
Vaccine recommendations
While the CDC guidelines for the 2025-2026 COVID-19 vaccine have not been published on the CDC website, COVID-19 vaccination was recommended for most individuals in previous years, especially individuals with impaired immune systems (immunocompromised) or other conditions in which there is an increased risk for severe COVID-19 infection if the person is not vaccinated.
Recommendations for children
The American Academy of Pediatrics (AAP) shared a prepublication release of updated recommendations for the 2025-2026 COVID-19 vaccine on August 19, 2025.
According to the release, COVID-19 vaccination is recommended for the children listed below if they do not have a contraindication such as an allergy to the vaccine. The number of vaccinations varies depending on previous COVID-19 vaccine status.
- All children between 6 months and 23 months of age.
- Children and adolescents between 6 months and 18 years who are immunocompromised.
- Children and adolescents 2 years through 18 years of age in the following groups:
- Individuals at high risk of severe COVID-19
- Residents of long-term care facilities or other congregate settings
- Individuals who have never been vaccinated against COVID-19
- Individuals whose household contacts are at high risk for severe COVID-19
- Children and adolescents 2 years through 18 years of age not included in the groups above “whose parent or guardian desires their protection from COVID-19”
Additional information is included in the AAP’s 2025 Recommended Child and Adolescent Immunization Schedule.
Recommendations for adults
The CDC guidelines for the 2025-2026 COVID-19 vaccine have not been published on their Staying Up to Date with COVID-19 Vaccines page. However, on the CDC’s Adult Immunization Schedule by Age page for health professionals, the CDC recommends that health professionals discuss the risks and benefits of COVID-19 vaccine with their patients ages 19 and older. It does indicate that those with greater risk for COVID-19 infection complications (such as people with Down syndrome) will have greater benefit compared to their risk from the vaccine. Recommendations from other organizations are listed below.
On September 8, 2025, the American Academy of Family Physicians (AAFP) released a recommendation that all adults 19 years and older should receive a COVID-19 vaccine this fall. The AAFP also said that it is especially important for people who are 65 years and older, are at increased risk for severe COVID-19 infection, or have never received a COVID-19 vaccine to get a COVID-19 vaccine this fall.
Multiple states have also issued immunization recommendations for the 2025-2026 respiratory season, including the state of Illinois and the West Coast Health Alliance.
What we recommend at the ADSC
People with Down syndrome fall into the category of vaccine recommendations for people who are at increased risk for severe COVID-19 infection. In addition, some people with Down syndrome live in long-term care facilities or congregate settings, which further increases their risk.
We recommend COVID-19 vaccination (including annual boosters) for our patients with Down syndrome who do not have a contraindication.
Our Resource Library has a page with visuals and videos to help people with Down syndrome learn about and prepare for getting the COVID-19 vaccine.
DSMIG-USA statement on vaccines
In September 2025, the Down Syndrome Medical Interest Group-USA (DSMIG-USA) issued a statement on the importance of vaccines for people with Down syndrome. The statement says:
Research and clinical experience show that children and adults with Down syndrome are more likely to get very sick from certain infections. Available vaccines are safe and protect against many of these infections. We are a group of doctors and scientists with significant experience with Down syndrome. We continue to review all the research on vaccines and people with Down syndrome. We are all in agreement that vaccines are safe and effective for people with Down syndrome. We know that getting vaccinated is one of the most important things that can be done to protect the health for someone with Down syndrome.
People with Down syndrome should receive all recommended vaccines. In some cases, your doctor may recommend that someone with Down syndrome get additional vaccines. This is done to provide extra protection from certain infections that could be more severe for people with Down syndrome.
Insurance coverage
Coverage details have not been fully established and may differ by payor. Medicare has stated that COVID-19 vaccines for 2025-26 will be covered under Part B. Cost savings may be available using coupons at retail pharmacies. People with concerns about payment are encouraged to contact their payor directly.
Long COVID
Long COVID is a condition of lingering symptoms or residual effects of having an acute COVID-19 infection. In 2022, the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) provided a summary of long COVID in adults with intellectual disabilities. They reported “notable subsequent cognitive effects, such as ‘brain fog,’ cognitive impairment, and dementia” in people with intellectual disabilities. The NTG recommends providing “compensatory aid for ‘brain fog’ and general cognitive impairment, as would be applicable with someone with mild cognitive impairment or dementia.”
Unfortunately, there are no approved treatments specifically for long COVID. There is much we do not know and much to learn about long COVID in people with and without Down syndrome or other intellectual disability.
Resources
Down syndrome
Advisory on Long-COVID and Impact on Cognitive Function in Adults with Intellectual Disability (NTG)
COVID-19 Publications Library (NTG)
Statement on Vaccines (DSMIG-USA)
Visuals and Videos About the COVID-19 Vaccine (ADSC)
General
AAFP Announces Fall Immunization Recommendations (AAFP)
About Physical Distancing and Respiratory Viruses (CDC)
Adult Immunization Schedule by Age (CDC)
At-Home COVID-19 Diagnostic Tests: Frequently Asked Questions (U.S. FDA)
Consensus WCHA 2025-2026 Respiratory Virus Season Immunization Recommendations (Oregon Health Authority)
Hygiene Basics (CDC)
Hygiene and Respiratory Viruses Prevention (CDC)
Immunization Recommendations for 2025-2026 Respiratory Virus Season (Illinois Department of Public Health)
Masks and Respiratory Viruses Prevention (CDC)
Recommendations for COVID-19 Vaccines in Infants, Children, and Adolescents: Policy Statement (AAP)
Recommended Child and Adolescent Immunization Schedule (AAP)
Standing Order for Administering 2025-2026 COVID-19 Vaccine (Illinois Department of Public Health)
Symptoms of COVID-19 (CDC)
Testing and Respiratory Viruses (CDC)
References
Clift AK, Coupland CAC, Keogh RH, Hemingway H, Hippisley-Cox J. COVID-19 mortality risk in Down syndrome: Results from a cohort study of 8 million adults. Ann Intern Med. 2021;174(4):572-576. doi:10.7326/M20-4986
Emes D, Hüls A, Baumer N, et al. COVID-19 in children with Down syndrome: Data from the Trisomy 21 Research Society survey. J Clin Med. 2021;10(21):5125. doi:10.3390/jcm10215125
Espinosa JM. Down syndrome and COVID-19: A perfect storm?. Cell Rep Med. 2020;1(2):100019. doi:10.1016/j.xcrm.2020.100019
Granholm AC. Long-term effects of SARS-CoV-2 in the brain: Clinical consequences and molecular mechanisms. J Clin Med. 2023;12(9):3190. doi:10.3390/jcm12093190
Hammond J, Fountaine RJ, Yunis C, et al. Nirmatrelvir for vaccinated or unvaccinated adult outpatients with Covid-19. N Engl J Med. 2024;390(13):1186-1195. doi:10.1056/NEJMoa2309003
Hammond J, Leister-Tebbe H, Gardner A, et al. Oral nirmatrelvir for high-risk, nonhospitalized adults with Covid-19. N Engl J Med. 2022;386(15):1397-1408. doi:10.1056/NEJMoa2118542
Hammond J, Leister-Tebbe H, Gardner A, et al. Alleviation of COVID-19 symptoms and reduction in healthcare utilization among high-risk patients treated with nirmatrelvir/ritonavir (NMV/R): A phase 3 randomized trial. Clin Infect Dis. 2025;80(2):323-330. doi:10.1093/cid/ciae551
Hüls A, Feany PT, Zisman SI, et al. COVID-19 vaccination of individuals with Down syndrome-Data from the Trisomy 21 Research Society survey on safety, efficacy, and factors associated with the decision to be vaccinated. Vaccines (Basel). 2022;10(4):530. doi:10.3390/vaccines10040530
Hüls A, Costa ACS, Dierssen M, et al. Medical vulnerability of individuals with Down syndrome to severe COVID-19-data from the Trisomy 21 Research Society and the UK ISARIC4C survey. EClinicalMedicine. 2021;33:100769. doi:10.1016/j.eclinm.2021.100769
Esparcia-Pinedo L, Yarci-Carrión A, Mateo-Jiménez G, et al. Development of an effective immune response in adults with Down syndrome after severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) vaccination. Clin Infect Dis. 2023;76(3):e155-e162. doi:10.1093/cid/ciac590
Pitchan Velammal PNK, Balasubramanian S, Ayoobkhan FS, et al. COVID-19 in patients with Down syndrome: A systematic review. Immun Inflamm Dis. 2024;12(3):e1219. doi:10.1002/iid3.1219
Proal AD, Aleman S, Bomsel M, et al. Targeting the SARS-CoV-2 reservoir in long COVID. Lancet Infect Dis. 2025;25(5):e294-e306. doi:10.1016/S1473-3099(24)00769-2
Valentini D, Cotugno N, Scoppola V, et al. Safety and long-term immunogenicity of BNT162b2 vaccine in individuals with Down syndrome. J Clin Med. 2022;11(3):694. doi:10.3390/jcm11030694
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