Ehlers Danlos and COVID-19

COVID-19 is an abbreviation for coronavirus disease. It is a fatal disease caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). It is a recently discovered and highly contagious pathogen that has been observed in humans recently. Even though it belongs to the same virus family as SARS and influenza viruses, SARS-CoV-2 is a unique strain with its own set of features.

After being discovered in Wuhan, China, in December 2019, the COVID-19 outbreak spread fast throughout the world, causing the World Health Organization (WHO) to proclaim a pandemic.

In this day and age, it is reasonable that people who have EDS and associated health difficulties are concerned about the possibility of getting the new coronavirus, which causes the severe illness. Continue reading to learn more about how the virus affects people who have EDS.

How does COVID-19 spread?

Because COVID-19 is a novel virus, no one has developed immunity to it, which means that the entire human population is at risk of becoming infected. According to the current information, scientists believe that the virus is spread mainly through respiratory droplets produced by people talking, coughing, or sneezing.

What are the signs and symptoms of COVID-19 infection?

  • The most common symptoms of COVID-19 appear between two and fourteen days following exposure. Fever, fatigue, and a dry cough are among the symptoms. Other signs and symptoms include loss of taste or smell, nasal congestion, sore throat, muscular and joint discomfort, chills, vomiting, nausea, and diarrhea.
  • The majority of these symptoms are relatively moderate, and approximately 80 percent of those who contract the virus will often recover without the need for any particular therapy or medication.
  • However, it is anticipated that approximately 15% of patients become very unwell and develop breathing difficulties and that 5% become critically ill and require extensive medical treatment. Shortness of breath, loss of appetite, and pain or pressure in the chest are all symptoms of COVID-19, which is a dangerous infection.
  • Older adults (over the age of 61) and individuals suffering from underlying medical illnesses such as diabetes, heart and lung problems, cancer, or elevated cholesterol are at the most significant risk of developing a life-threatening disease.

Is there any advice for persons who have Ehlers-Danlos syndrome in this pandemic?

According to the existing research, most patients with Ehlers-Danlos syndrome do not appear to be at increased risk of getting COVID-19 or experiencing more severe symptoms than the general population. Like heart or lung problems or a weakened immune system, those with other underlying diseases may be at greater risk of developing more severe complications from the virus than others. Patients with EDS should, in general, adhere to the recommendations stated above.

Is there a link between certain health conditions (of EDS) and the risk of COVID-19 complications in the general population?

The general public has been regarded as having a higher risk of problems from covid-19 than others, with specific individuals being classified as high risk. Several official organizations, including the World Health Organization [WHO], the Centers for Disease Control and Prevention [CDC], and others, have stated that these are harmful:

  • People with a pre-existing heart condition
  • The presence of any underlying lung condition
  • People with high blood pressure
  • Diabetes
  • The Elderly
  • Reduced immunity




How Do These Risks Apply to a Person with EDS or HSD?

The likelihood of developing issues from covid-19 for a person with EDS or HSD will vary depending on the extent of that individual’s specific health concerns. Some individuals may be at risk for one or more of the dangers outlined. Many patients with EDS or HSD, on the other hand, will not have any of these risk factors.

Many patients with EDS or HSD, on the other hand, will not have any of these risk factors.

Consider the following issues that increase the likelihood of complications:

For people with a pre-existing heart condition

Heart valve disease (moderate to severe valve disease), aneurysms/dissections (VASCERN, Vascular Disease Network), and severe pectus deformity resulting in heart function abnormalities are examples of conditions that fall under this category.

However, it is unclear if mild mitral valve prolapse (MVP) is associated with a higher risk of consequences from COVID-19 infection.

Bacteria that enter the bloodstream can cause endocarditis, an infection of the inner lining of the heart chambers and valves, which occurs only in rare cases. When a person has Mitral Valve Prolapse, their risk of infection is increased because the malformed mitral valve flap might attract bacteria already in the bloodstream.

POTS (Postural Orthostatic Tachycardia Syndrome) is not known to be a concern, but it may exacerbate as a result of dehydration if a person is ill.

For people with an underlying lung condition

Having EDS or HSD does not appear to be a contributing factor to the development of lung illness in many cases. However, several pulmonary diseases might develop in EDS that should be taken into consideration:

  • Poor lung volumes can occur in those who have severe kyphosis/scoliosis or emphysema, which may be a source of concern since they may increase the risk of developing pneumonia.
  • In addition, a pneumothorax may cause a persistent dry cough and sudden/increasing shortness of breath, among other symptoms (sudden partial or complete collapse of a lung). A pneumothorax can occur spontaneously or develop in a person who has been diagnosed with cystic (bullous) lung disease. Unless a person has already experienced a pneumothorax, there is no way to determine if they are at increased risk of developing one due to forceful coughing due to a respiratory infection.
  • Furthermore, some patients with EDS and HSD experience apnea (breathing stops and repeatedly resumes, mainly when sleeping.
  • Wheeze and cough are prevalent in EDS, with a recent extensive survey finding that they affect an average of 15-20 percent of people with hEDS, cEDS, and vEDS.  If a person is concerned that they are developing a respiratory infection, the change in the intensity of these symptoms should be reported to an attending doctor. This is true for COVID-19 as well as any other respiratory infection.

Reduced immunity

Immune suppression is achieved through pharmaceuticals such as steroids and disease-modifying therapies such as azathioprine and methotrexate.

People with COVID-19 infection have been reported to have Mast Cell Activation Syndrome (MCAS), and it has been suggested that drugs used to treat the illness may be beneficial. According to a recent article, none of their treated MCAS patients who had COVID-19 experienced severe consequences due to the disease.

Other specific concerns that people with EDS or HSD may have included the following:

Dysautonomia (lack of self-control)

According to current research, more severe consequences from COVID-19 are not known to be associated with postural orthostatic tachycardia syndrome (POTS) or orthostatic hypotension (OH). However, if a person becomes very dehydrated while suffering from any condition, especially COVID-19, the symptoms of POTS or OH may intensify. The recommendation is to make an effort to maintain enough hydration intake.


Some women may be apprehensive because they are expecting a child. In general, it does not appear that pregnant women are more likely than other healthy individuals to become very ill if they contract the new coronavirus. Most pregnant women are predicted to endure relatively mild or moderate cold/flu-like symptoms according to expectations.

One reason to be concerned about covid-19 during pregnancy is that pregnant women are more likely than non-pregnant women to become very ill with the flu.

However, preliminary reports indicate that covid-19 may not significantly impact pregnant women or their newborn newborns.

Non-Steroidal Anti-Inflammatory Drugs (NSAIDs)

Recently, the media has advised that Ibuprofen (a Non-Steroidal Anti-Inflammatory Drug, or NSAID) should avoid symptom relief from covid-19 (a virus that causes inflammation). According to some research, Ibuprofen can suppress the immune system and make it more challenging to recover from an infection. It is possible that Ibuprofen, when used during an illness, will produce more severe disease and problems. The recommendation is to take paracetamol in its place.

Antibiotics for Bacterial Pneumonia

Antibiotics do not destroy viruses, but a person who has a viral illness may develop an additional bacterial infection due to the viral infection. Penicillin (e.g., Amoxicillin), a Macrolide (e.g., Clarithromycin), and Tetracyclines are among the first-line antibiotics for bacterial pneumonia, according to the American Academy of Pediatrics (e.g., Doxycycline). Fluoroquinolones (e.g., Ciprofloxacin, Levofloxacin, Norfloxacin) may be included in the second line of antibiotics.

According to the FDA, EMA, and other international medicines regulator recommendations, patients who have an aortic aneurysm or are at risk of developing an aortic aneurysm should not be provided fluoroquinolones unless there is no other acceptable treatment available.

This risk is most prevalent in the Ehlers-Danlos syndromes, specifically the vascular Ehlers-Danlos syndrome [vEDS] and its variants. Individuals with other rare varieties of EDS may occasionally develop aortic aneurysms. Any person may develop an aneurysm for whatever reason — the advice applies to both of these groups of individuals.

Most people with EDS (except for those in the categories indicated above) do not have an increased risk of an aneurysm due to their condition.

Fluoroquinolones have also been linked to severe and potentially permanent issues in the tendons, muscles, joints, nerves, and central nervous system, according to the Food and Drug Administration (FDA), the Medical Research Council (MHRA), and other international medicine regulators. There have been instances, for example, where tendon inflammation and tendon rupture have both happened in the same patient. This has been observed most frequently (but not solely) near the Achilles tendon. Tendon rupture appears to be more common in people over 60 who are also taking corticosteroids simultaneously as they take the fluoroquinolone antibiotic. According to research, antibiotics ofloxacin and norfloxacin are the most likely to cause tendon rupture.

When comparing EDS or HSD patients to the general population, it is unknown whether they have a higher risk of tendon rupture or other non-vascular adverse effects.

If there is no alternative relevant class of antibiotic available. In that case, fluoroquinolones should not be used for uncomplicated infections (e.g., mild-moderate nasal congestion, bronchitis, or cystitis) as a precaution to limit the general population’s risk.

The use of fluoroquinolone antibiotics in treating infections may be the only option available when bacteria are resistant to conventional antibiotics or when the illness is generating dangerous complications such as sepsis. In these cases, doctors and their patients must decide if the hazards of taking a fluoroquinolone outweigh the benefits of taking the drug in question.

Gastrointestinal (GI) symptoms and risk of spreading covid-19

Some persons with EDS or HSD have more difficulty with bowel function than others, and they should practice proper colon hygiene to avoid these dangers altogether. The possibility that Feces could transfer coronavirus has been demonstrated.

  • The most frequent symptoms in adults include coughing, fever, tiredness, and sore throat.
  • However, in certain instances, gastrointestinal symptoms such as nausea and diarrhea may occur.
  • There is a possibility that the virus will be found in gastrointestinal mucous secretions and feces.
  • Gastrointestinal infection and the possibility of transmission of infection by fecal contamination or poor hand hygiene must be treated as any other diarrheal sickness.


A few people continue to experience COVID-19-related side effects even after they have recovered from the acute phase of the infection, which can last for months. COVID (Long COVID) is a name used to designate this type of operation.

Without ever having had COVID-19, many members in the HSD and EDS communities will already be experiencing the symptoms mentioned in “Long COVID.” The Ehlers-Danlos Society Global Registry conducted a very recent survey, and the results (from 1340 responses) revealed that even before the appearance of COVID-19, 98 percent of people suffered from joint pain and chronic fatigue, and 74 percent suffered from breathing difficulties

Identifying whether new or worsening symptoms are due to worries about HSD or EDS or whether they are due to COVID-19 infection in those who can be proven to have had the disease will be one of the most challenging problems. However, we anticipate that the clinics and research facilities being established to assist persons with Long COVID will advance knowledge and treatment of chronic symptoms that can occur in various other illnesses, including other diseases.

Following the World Health Organization (WHO) and local advice on lowering the risk of infection and spreading infection, the Ehlers-Danlos Society recommends that everyone seek medical assistance if they have any questions or concerns regarding their unique health issues.

Covid-19 vaccines recommendation in EDS patients

We are aware of the most recent news regarding two patients in the United Kingdom. They have a history of severe allergy having an adverse reaction to the Pfizer BioNTech immunization for COVID-19, which was released recently.

Medicines cause allergies and intolerances in a lot of members of our community. Suppose you have had severe reactions in the past and need to carry an adrenaline autoinjector to treat anaphylaxis. In that case, you should follow the MHRA’s recommendations or talk to your doctor about your fears.

Those who have previously experienced anaphylaxis to a vaccination, medicine, or food should avoid receiving the Pfizer/BioNTech vaccine, according to the Medicines and Healthcare Products Regulatory Agency (MHRA).

In response to several inquiries, the Ehlers-Danlos Society has determined that those who have EDS or HSD should receive the COVID-19 immunization. Currently, we aren’t aware of any studies that have explicitly looked into EDS or HSD. Many EDS or HSD people suffer from chronic and complex health problems that could be exacerbated if they contracted COVID-19. For the vast majority of our community, as well as for many individuals suffering from chronic conditions, the benefits of protection against the COVID-19 virus are likely to outweigh the risks of contracting the infection (particularly Long Covid) or experiencing side effects from the vaccine.

A person with EDS or HSD may have a history of severe reactions to injections, such as the flu vaccine or pneumococcal vaccine, or they may have had an anaphylactic reaction in the past. The dangers of receiving a COVID-19 immunization should be discussed with a doctor in some instances or particular health concerns before receiving the vaccine.

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