Signs That Your Student Might Be Struggling With Ehlers-Danlos Syndrome: Middle School Edition

As part of the Norris Lab's ongoing EDS research and community engagement efforts, we regularly hear from teachers and parents trying to understand what a student struggling with Ehlers-Danlos syndrome may actually be dealing with. In response, we have created a downloadable, printable pamphlet for school teachers, staff, and nurses to better recognize the signs and symptoms. The Ehlers-Danlos syndromes are a group of inherited connective tissue disorders that cause joint hypermobility, joint instability, chronic pain, and a whole slew of other symptoms, some overlapping across subtypes and others unique to each. While every other subtype of EDS is classified as a rare disease, meaning it affects fewer than 1 in 2000 people, the hypermobile subtype, known as hypermobile Ehlers-Danlos syndrome, is believed to be as common as 1 in 500 people (or more!) . While this blog post draws heavily on hEDS research given its higher prevalence, the symptoms and accommodations discussed apply broadly across EDS subtypes, as explained below.

Why This Pamphlet Uses "EDS," Not Just "hEDS"

You'll notice this pamphlet refers broadly to EDS rather than exclusively to hEDS, even though hEDS is the most prevalent subtype and much of the research cited in this blog post focuses on it. While hEDS is the subtype most likely to be sitting undiagnosed in a classroom given its higher prevalence, students with other subtypes, including classical EDS (cEDS) and classical-like EDS (clEDS), share many of the same joint hypermobility, connective tissue fragility, and dysautonomia related symptoms outlined in this guide. A teacher trying to recognize a struggling student does not need to know which of the fourteen subtypes that student may have, but hopefully, they can recognize the pattern of symptoms in front of them.

Every subtype of EDS shares an underlying thread of connective tissue fragility and joint instability, even though the genetic cause, inheritance pattern, and specific presentation differ. A student with cEDS may show more pronounced skin fragility, atrophic scarring, or easy bruising alongside joint hypermobility. A student with clEDS may present with hypermobility and soft, velvety skin without the same atrophic scarring pattern. These differences matter clinically, but in a classroom setting, the accommodations these students need, flexible seating, modified PE participation, pencil grips, permission to visit the nurse, may look largely the same.

This guide is not meant to imply that rarer subtypes are less deserving of recognition because they are less common. It is meant to equip teachers to notice a pattern and start a conversation, regardless of which type of EDS a student may eventually be diagnosed with.

hEDS, the most common subtype:

Hypermobile EDS is likely polygenic, and the genetic variants that cause the condition are still under investigation. Patients currently cannot get a genetic test to see if they have the variant(s) that cause hEDS, because we still don't know the full scope of those variants. We are moving closer every year, but the absence of genetic testing makes this subtype difficult to diagnose. Because of this, hEDS is diagnosed clinically. On average, patients with hEDS wait 22.1 years for a diagnosis after the onset of their symptoms. 70% of hEDS patients also report experiencing a "triggering event" (such as a viral pathogen, environmental exposure, trauma, or hormonal shift) that coincided with the onset or severe worsening of their hEDS symptoms. For many, puberty may be that triggering event. For girls, that makes middle school a tenuous time, when symptoms may begin to emerge more often or with greater severity and continue through high school and beyond.

hEDS is often described as an invisible or non-apparent disease. Sometimes, these children may appear relatively healthy, despite dealing with pain and symptoms from their chronic illnesses. Young students may also struggle to articulate or describe their pain and symptoms and may not recognize that their discomfort is not "normal".This can lead teachers, classmates, and the school administration to misunderstand their actions or behaviors; for example, attributing missed school to a lack of motivation when, in reality, they have frequent doctor's appointments, are in bed sick, or are in and out of the hospital. Signs and symptoms that may indicate a child is struggling with hEDS include: joint hypermobility, joint dislocations, chronic pain, excessive tiredness or fatigue, dizziness, lightheadedness, easy bruising, and skin rashes. Students may have difficulty writing or gripping pencils the way they are taught in school, show off their flexibility or party tricks, complain of stomachaches, and take frequent trips to the nurse.

The Triad: hEDS, POTS, and MCAS

The dizziness, lightheadedness, and stomachaches may seem like a random amalgamation of symptoms, but they are actually often linked to conditions that commonly accompany hEDS. Dysautonomia, specifically POTS (postural orthostatic tachycardia syndrome), is common in hEDS patients and can cause fainting, rapid heart rate, and lightheadedness upon standing. These symptoms might manifest as a student suddenly needing to sit down or asking to leave class. The third piece of the triad is MCAS, or mast cell activation syndrome, a condition where immune cells release a number of chemicals too easily or inappropriately. These chemicals may include histamine, growth factors and other immune proteins such as cytokines and chemokines. In students, MCAS can show up as stomachaches, nausea, food sensitivities, hives, or flushing that seem to come out of nowhere. Research shows allergic and immune-related conditions, including MCAS, occur at significantly elevated rates in hEDS patients. A student who seems to have a "sensitive stomach" may actually be managing mast cell activation syndrome tied to their hEDS. GI dysmotility is also frequently seen alongside hEDS and can explain recurring stomach pain. Because POTS, MCAS, and hEDS (including GI symptoms) tend to cluster together, they're often discussed as a connected "triad" rather than separate, unrelated issues.

Understanding "Party Tricks"

Kids with EDS often don't realize their flexibility is unusual, so showing off double-jointed fingers or hyperextended elbows isn't attention-seeking; it's just what their bodies do. Many EDS symptoms hide in plain sight, and joint hypermobility is a good example. A student might bend their thumb back to touch their forearm, hyperextend their elbows or knees, or pop a shoulder in and out during class. To peers, this may look like a party trick, but in reality, this signals that a student is dealing with joint hypermobility. Clinicians use a screening tool called the Beighton score to assess generalized joint hypermobility, and many of the movements that look like "party tricks" in the classroom are the same movements used in that clinical assessment. Joint hypermobility itself isn't an issue; it becomes problematic when other symptoms accompany it, and it begins to impact quality of life.

When It Looks Like Poor Attention

Chronic pain, fatigue, and the attention lapses associated with dysautonomia can look a lot like inattentiveness in a classroom setting. A student who seems to be zoning out, missing instructions, or struggling to focus may be managing pain or lightheadedness, not simply losing interest. Additionally, hEDS may often co-occur with ADHD. One study looking at prevalence of ADHD in hEDS and HSD found that in the age group of 15–16 year-olds, 35% of those with hEDS had ADHD and, among those aged 17–18 years, ADHD was present in 46%. Teachers are often the first to notice a pattern, which makes awareness of this overlap especially valuable.

More Signs to Watch For

Beyond "party tricks" and stomach aches, EDS in students can show up in ways that are easy to miss or misread:

• Sitting in unusual or contorted positions at their desk

• Brain fog or trouble concentrating that fluctuates day to day

• Low muscle tone and poor posture or coordination

• Frequent headaches or light sensitivity

• Difficulty carrying textbooks or a backpack

• Difficulty with writing or gripping pencils/pens (see images below)

• Getting flagged during routine scoliosis screening

Because these symptoms can appear to be laziness, attention-seeking, or lack of focus, a student is often misjudged long before anyone considers a connective tissue disorder as the explanation.

In PE, Flexibility Isn't Always a Good Thing

PE class deserves its own mention. Never force participation in an activity that causes pain, and let students sit out without penalty. It's also worth resisting the urge to praise a student's extreme flexibility; it might look impressive, but showing it off can actually cause injury in students with this condition.

When Absences Add Up

Because flare-ups can lead to frequent absences, students benefit from a designated way to catch up, such as a folder of missed assignments kept up to date or a peer assigned to help them stay on track. These tools can prevent a student from falling permanently behind after a rough week. This is important when considering long-term consequences. One study of childhood chronic illness broadly, published in the Journal of Adolescent Health, found that, compared with the control group without chronic illness, young adults with childhood-onset chronic illness had lower rates of high school graduation (87.1% vs. 91.9%), college attendance (57.6% vs. 71.9%), and college graduation (18.0% vs. 32.2%). They are also more likely to take lower-paying jobs and fall below the poverty line. It is important that we, as a society, recognize that accommodations in schools at a young age are direct contributors to lifelong health and socioeconomic status, which drives health and well-being. 

A Few Things to Keep in Mind

These conditions exist on a spectrum. Some students will be significantly affected, others more mildly — severity alone shouldn't determine whether a student's concerns are taken seriously. It's also worth watching for signs of social withdrawal, like avoiding recess or resisting going to school, which can be an early indicator that something is wrong.

School and Classroom Accommodations

Awareness matters, but so does action. A few accommodations can make a significant difference for a student navigating EDS at school:

• Elevator access and extra time between classes for joint pain or fatigue

• Modified PE participation, avoiding forced stretching or high-impact activity

• Pencil grips, slant boards, or laptop use for students with handwriting difficulty

• Flexible bathroom and nurse passes for POTS-related symptoms

• Flexible seating that can allow the student to shift positions throughout class

• Spare textbooks in the classroom so students don't need to carry heavy books between classes

• Fidget toys, which can help redirect restlessness caused by pain or discomfort

• 504 plan or IEP consideration, giving families a formal framework to request support

504 Plans, IEPs, and the Right to a Fair Education

If a student's symptoms are affecting their learning, a 504 plan may be worth pursuing. Importantly, a formal diagnosis isn't required to start this process. A doctor's note is a valid first step. If a student's struggles concern you, start by talking to the school nurse; you don't need a diagnosis to begin advocating for them. An IEP is a different, more involved process reserved for students whose disability significantly impacts their ability to learn, while a 504 plan is generally the right starting point for accommodations alone.

The Emotional Weight of Being Disbelieved

Years of being seen as dramatic or lazy take a toll. Many EDS patients report anxiety, school avoidance, and social isolation tied to this pattern of disbelief, often starting in childhood, before they have the language to advocate for themselves. Recognizing EDS early doesn't just support a child's physical health; it protects their sense of being believed and their sense of belonging in academic spaces.

Learn More

For questions about EDS in children, go to thenorrislab.com. The pamphlet is available for download or print at thenorrislab.com/resources.