Frequently Asked Questions
About EDS

Is EDS heritable?

​

Yes, EDS is a heritable condition. EDS is most commonly passed down as an autosomal dominant mutation from a parent, this is a contributing factor for the prevalence of certain subtypes over others (i.e. hypermobile, vascular and classic EDS). This means that for every gene pair, only one of the two halves or alleles needs the mutation of interest for EDS to be expressed in the individual. Alternatively, some rare EDS subtypes are passed down through an autosomal recessive pattern of inheritance, this means that both copies of a gene (one from each parent) must be mutated for an individual to express certain types of EDS (i.e. kyphoscoliotic and brittle cornea syndrome) (Miklovic & Sieg, 2022; Ritelli & Colombi, 2020; Malfait et al., 2017).

​

Several mutations contribute to both the type of EDS inherited as well as the severity of potential symptoms as multiple genes responsible for creating collagen may be disrupted. While some mutations with no relation to collagen production exist, they still remain linked with high prevalence to individuals with EDS (Malfait et al., 2017). In summary, various mutations in approximately 20 genes have been identified across the 13 EDS subtypes (Miklovic & Sieg 2022; Malfait et al., 2017). 

 

 

 

 

 

 

 

 

 

 

 

​

 

​

​

​

​

Is EDS contagious?

​

No, Ehlers-Danlos Syndrome is not contagious as it is a genetic condition only achieved through obtaining the genetic puzzle pieces of interest from a parent or from both parents (Ritelli & Colombi, 2020; Malfait et al., 2017; Malfait & De Paepe, 2014).

​

​
 

How common is EDS?

​

The most common forms of EDS, such as the hypermobile subtype, may affect as many as 1 in 5,000 people (Miklovic & Sieg, 2022). However, a study conducted by researchers in the United Kingdom found the prevalence to be slightly higher at 10 in 5,000 people with a division of 30% men and 70% women (Miklovic & Sieg, 2022; Demmler et al., 2019). It is important to note however, that more rare subtypes may only have a prevalence of 1 in 20,000-40,000 people or a limited number of documented cases in modern medicine (Miklovic & Sieg, 2022). 

​

​

​

What comorbidities tend to affect those with EDS?

​

While further studies should be conducted to formally conclude the causality between EDS and related conditions and diseases, studies done up until now have found there to be some degree of overlap in cohorts of EDS patients and certain comorbidities. Common comorbidities found in EDS patients include asthma, anxiety, depression, pneumonia, osteoporosis, gastrointestinal functional disorders, joint stiffness (arthralgia), muscle pain (myalgia), head and neck pain, various degrees of organ dysfunction, hernias, chronic fatigue, sleep disorders, and autonomic dysfunction of heart rate, blood pressure, bladder function and digestive regulation (Miklovic & Sieg, 2022; Leganger et al., 2022; Di Giacomo et al., 2018; Malfait et al., 2017).

​

​

​

What are common treatments and remedies prescribed to EDS patients?

​

It is important to note that every individual with EDS is unique with their own challenges, symptoms, treatment plans and prognoses. However, some treatments and remedies are prescribed/recommended by many practitioners. Physical therapy, in particular for the hypermobile subtype, may be utilized to aid in managing pain and issues with proprioception, the body’s ability to sense its location in space (Reychler et al., 2021).

 

To manage chronic pain, treatments may include nociceptive therapies to help strengthen/stretch muscles and joints and neuropathic therapies to manage mental symptoms using drug classes such as antidepressants or anticonvulsants (Zhou et al., 2018). Alternatively, medications used for pain management include as Acetaminophen (Tylenol), Non-steroidal Anti-Inflammatories (NSAIDs), opioids, opiates, tricyclic antidepressants, and selective serotonin re-uptake inhibitors (SSRIs) (Zhou et al., 2018). In summary, chronic pain management may include psychotherapy, physical therapy, pain medications, pain interventions to strengthen muscles and joints, and surgery in extreme cases (Zhou et al., 2018).