Authors: Kanak Gupta, MSc student, University of Toronto | Editors: Romina Garcia de leon, Janielle Richards (Blog Coordinators) | Expert Reviewer: Jesse Lacasse
Published: June 27th, 2025
Sometimes being too good at yoga is a bad thing
Growing up, I often amused my friends with my double-jointed party tricks—bending my fingers backwards to touch my wrists, popping my shoulders in and out of place, exceeding the normal range of movement. However, the older I got, the more I realized that my hypermobility came at the cost of recurrent joint issues, subluxations, and dislocations from everyday activities. Physical activity would result in chronic pain in my knees, back, and feet that no one my age was complaining about. There were also constant inexplicable bruises on my body, scars that never fully healed, and clumsiness that seemed almost clinical. Then came issues such as strange migraines, neuropathies, and reproductive health issues that came and went with no clear pattern and which doctors couldn’t seem to find the root causes of.
Then a coworker, who had been diagnosed with Ehlers-Danlos Syndrome, suggested that maybe I have it as well.The hypermobility, the joint issues, and all the idiopathic disorders that kept cropping up fit perfectly into the diagnostic criteria of this family of rare connective tissue disorders that I had never even heard of before: Ehlers-Danlos Syndromes (EDS) or Hypermobility Spectrum Disorders (HSD). Because of the rarity of these conditions (ranging from 1 in 5000 for the more common types, to 1 in a million for the ultra-rare types), many doctors often don’t even think of EDS/HSD as possible diagnoses. This leads to gross underdiagnosis and mistreatment, and often most patients who do get diagnosed with EDS/HSD are those who learned about the disorders independently and actively pursued an official diagnosis.
What is EDS?
While commonly referred to Ehlers-Danlos Syndrome, EDS is actually a family of 13 types of heritable connective tissue syndromes. Connective tissue plays a multitude of roles in the body—connecting muscles and bones, providing strength and support to joints, adding structure and protecting organs. Thus, EDS, which is primarily hyperelasticity or weakening of connective tissue can affect various bodily systems. However, joint hypermobility (i.e. joints that move beyond their usual range of motion), skin hyperflexibility, and tissue fragility are common to all types of EDS. Some people who might not meet all the criteria of an EDS type may be diagnosed with a Hypermobility Spectrum Disorder (HSD). The most common markers of EDS in patients are hyperflexibility, chronic joint pains, frequent joint dislocations or subluxations, and even skin that bruises easily.
Additional symptoms are dependent on EDS type. A person with Hypermobile EDS (hEDS)—the most common type, making up about 90% of EDS cases—might have other symptoms such as abnormal scarring, chronic fatigue, gastrointestinal issues. In rarer types of EDS, one might experience symptoms such as weak arterial and organ walls leading to increased risk of rupture (Vascular EDS), gum disease and tooth loss (Periodontal EDS), or corneal issues (Brittle Cornea Syndrome). People with EDS also present with several types of congenital malformations dependent on EDS type and have higher than normal rates of comorbidities with disorders such as Postural Orthostatic Tachycardia Syndrome (POTS—an autonomic nervous system disorder that can lead to spells of dizziness or fainting with sudden standing up or sitting down movement), autoimmune conditions such as Mast Cell Activation Syndrome (MCAS), and even neuropsychiatric disorders.
Even within the same type of EDS, the specific constellation of symptoms and their severity is unique to each patient. The syndromes are very heterogeneous and their severity can range from mild enough that some patients go their entire lives without realizing they have EDS to severe cases that can lead to lifelong disabilities. Given the impact these disorders have on quality of life, an early diagnosis is extremely important.
EDS is a women’s health issue
This is especially true for women with EDS as they are at risk of an entirely additional set of reproductive health issues. Hormonal events such as puberty, pregnancy, and menopause can all affect EDS symptoms. A research study following 386 women with hypermobile EDS found that puberty worsened EDS symptoms in 52% of women and led to the development of new symptoms in 17% of the women. Fluctuations in circulating sex hormones such as estradiol and progesterone have been linked to greater joint laxity, with some studies suggesting that joint laxity may be affected by the menstrual cycle. Furthermore, women with EDS often suffer from menstrual issues such as excessive menstrual bleeding, painful periods, and irregular cycling. Some women may experience chronic pelvic pain, pain with sex, and have chronic pain/discomfort of the vulva. Importantly, EDS increases the risk of pelvic prolapse, affecting any pelvic organ.
Pregnancy in people with EDS can also be an exceptionally challenging time. Increased body weight and strain on the spine and pelvis can lead to more back and joint pain than usual. Unwanted symptoms of pregnancy such as morning sickness, headaches, intensified swelling of limbs. Given the weakness of organ walls—including blood vessels—there is also an increased risk of developing varicose veins or other cardiovascular issues. This weakness extends to uterine walls and connective tissue in the pelvis, which makes miscarriages more common in EDS patients. Hyperextensibility of the cervix can lead to complications such as premature breaking of waters or a fast labour during delivery. These issues can persist post-delivery, as people with EDS may have more bleeding than usual and slower healing of stitches due to skin and tissue fragility. Overall, there is an increased risk of premature birth and maternal mortality, so it is extremely important that pregnant individuals inform their medical care team of their EDS diagnosis to better prepare for pregnancy and labour with extra safeguards and care.
Living with EDS
While an EDS diagnosis may seem like a daunting life sentence, awareness can help prevent or mitigate some of the worst harms of the disorders and ultimately lead to a better quality of life. Having more information about their symptoms and forewarning about future risks can help patients take preventative measures such as seeking out physical therapy to strengthen joints, avoiding exercises or sports that might increase risk of injury, and making informed decisions when it comes to major life events such as pregnancies or surgeries. (For me, this comes in the form of practicing low impact exercises that strengthen muscles, like swimming and pilates.) The invisible disability of EDS can be an isolating condition and suffering from seemingly inexplicable and untreatable bodily issues occurring at higher rates than one’s peers can leave people with EDS feeling dismissed or labeled as hypochondriacs. Thus, while scary, an EDS diagnosis can often be a relief as it can help to connect the dots and provide answers to the many questions undiagnosed patients live with.
If you find the following information relevant to you or someone you know, the Ehlers-Danlos Society’s website (www.ehlers-danlos.com) is a great starting point for comprehensive information about the syndromes and how to find appropriate medical care for it.
