Growing up can be challenging for any child, but for those with Ehlers-Danlos Syndrome (EDS), childhood often comes with unique struggles that may go unnoticed for years. Many adults looking back on their childhood realize that the 23 signs you grew up with ehlers-danlos syndrome were present all along, disguised as being "clumsy," "dramatic," or simply "different." Understanding these signs can help both parents and adults recognize this complex connective tissue disorder earlier, leading to better management and improved quality of life.
Ehlers-Danlos Syndrome is a group of inherited disorders that affect connective tissues, primarily the skin, joints, and blood vessels. While there are several types of EDS, they all share common characteristics that often manifest during childhood. Unfortunately, many children with EDS go undiagnosed because their symptoms are attributed to normal childhood behaviors or growing pains. This comprehensive guide explores the telltale signs that may indicate a child has been living with EDS, helping families understand when to seek medical evaluation.
Understanding Ehlers-Danlos Syndrome in Children
Ehlers-Danlos Syndrome affects approximately 1 in 5,000 people worldwide, yet many cases remain undiagnosed well into adulthood. The condition primarily impacts collagen production, a protein that provides strength and elasticity to connective tissues throughout the body. When collagen is defective or insufficient, it affects virtually every system in the body, from joints and skin to blood vessels and internal organs.
Children with EDS often develop coping mechanisms early in life, adapting to their symptoms without realizing they're different from their peers. Parents and teachers may dismiss concerning signs as normal childhood behavior, delayed development, or attention-seeking. However, recognizing the 23 signs you grew up with ehlers-danlos syndrome can be the first step toward proper diagnosis and treatment.
The challenge with diagnosing EDS in children lies in the fact that many symptoms overlap with common childhood issues. Joint pain might be attributed to growing pains, frequent injuries to clumsiness, and fatigue to a busy schedule. Additionally, children may not have the vocabulary or awareness to articulate their symptoms effectively, making it even more difficult for healthcare providers to identify the underlying condition.
According to recent research highlighted by health experts at bigwritehook.co.uk Blog, early recognition of EDS symptoms can significantly improve long-term outcomes for affected individuals. The sooner a child receives appropriate care, the better they can learn to manage their condition and prevent complications.
Physical Signs and Symptoms
Joint Hypermobility and Instability
One of the most recognizable signs among the 23 signs you grew up with ehlers-danlos syndrome is excessive joint flexibility. Children with EDS can often bend their joints far beyond the normal range of motion, creating party tricks that amaze friends and family. However, this hypermobility comes at a cost, often leading to frequent dislocations and subluxations (partial dislocations).
Parents might notice their child can touch their thumb to their wrist, bend their fingers backward unusually far, or perform splits with ease. While flexibility can seem like an advantage, it often results in joint instability that causes pain and increases injury risk. Children with EDS may complain of joints "popping out" or feeling loose, and they might develop a habit of cracking joints for temporary relief.
The hypermobility typically affects multiple joints throughout the body, including shoulders, elbows, wrists, hips, knees, and ankles. This widespread joint laxity can impact a child's ability to participate in sports or physical activities, as they may be more prone to injuries than their peers. Teachers and coaches might notice that the child seems unsteady or has difficulty with activities requiring joint stability.
Skin Characteristics and Healing Issues
Another prominent feature among the 23 signs you grew up with ehlers-danlos syndrome involves distinctive skin characteristics. Children with EDS often have unusually soft, stretchy skin that can be pulled away from the body more than normal. This hyperextensible skin may feel velvety to the touch and can be quite fragile, tearing easily from minor trauma.
Healing problems are also common, with cuts and wounds taking longer to close properly. Children might develop atrophic scars that appear thin and wide, giving a characteristic "papery" appearance. Parents often notice that their child seems to bruise more easily than siblings, with bruises appearing from seemingly minor bumps or even without any remembered injury.
The skin might also show other abnormalities, such as molluscoid pseudotumors (small, fleshy growths) over pressure points like elbows and knees. Some children develop striae (stretch marks) during growth spurts, even without significant weight changes. These skin manifestations often cause self-consciousness in children and adolescents, potentially impacting their social interactions and self-esteem.
Cardiovascular and Circulatory Signs
Blood Pressure and Circulation Problems
Cardiovascular symptoms represent some of the more serious indicators among the 23 signs you grew up with ehlers-danlos syndrome. Children with certain types of EDS, particularly the vascular type, may experience blood pressure irregularities and circulation problems that can be life-threatening if left unrecognized.
Orthostatic intolerance is common, meaning children may feel dizzy, lightheaded, or even faint when standing up quickly. This happens because their blood vessels don't constrict properly to maintain blood pressure during position changes. Parents might notice their child complains of feeling "woozy" after getting up from bed or a chair, or they might observe the child needing to sit down frequently during activities.
Heart palpitations and irregular heartbeats can also occur, though these symptoms might be dismissed as anxiety or excitement in children. Some children with EDS develop mitral valve prolapse or other structural heart abnormalities that require monitoring. The fragility of blood vessels can also lead to easy bruising and, in severe cases, spontaneous bleeding or vessel rupture.
Temperature regulation problems are another cardiovascular-related sign, with children experiencing cold hands and feet, or having difficulty maintaining normal body temperature. These circulation issues often worsen during adolescence and can significantly impact a child's daily activities and quality of life.
Easy Bruising and Bleeding
The tendency toward easy bruising and prolonged bleeding is a hallmark sign that appears consistently in the 23 signs you grew up with ehlers-danlos syndrome. Children with EDS often develop bruises from minimal contact, leading parents and teachers to worry about potential abuse or other underlying conditions.
These bruises may appear in unusual patterns or locations, and they often take longer to heal than normal. Children might develop bruises on their legs from simply bumping into furniture, or on their arms from carrying books. The bruising can be particularly problematic during school years, as it may lead to unnecessary investigations or concerns from well-meaning adults.
Nosebleeds are also more common in children with EDS, often occurring spontaneously or with minimal provocation. Dental procedures may result in excessive bleeding, and minor cuts might require longer pressure application to stop bleeding. Parents should keep detailed records of these incidents to help healthcare providers recognize the pattern and make appropriate referrals for evaluation.
Gastrointestinal and Digestive Issues
Chronic Digestive Problems
Gastrointestinal symptoms form a significant portion of the 23 signs you grew up with ehlers-danlos syndrome, though they're often overlooked or attributed to other causes. Children with EDS frequently experience chronic constipation, abdominal pain, and digestive irregularities that can significantly impact their daily lives and nutritional status.
The connective tissue abnormalities in EDS affect the digestive tract, leading to slower gut motility and poor coordination of digestive muscles. Children might complain of feeling full quickly, experiencing bloating after small meals, or having irregular bowel movements. These symptoms can be particularly challenging during school hours, as children may feel uncomfortable or unable to concentrate due to digestive distress.
Gastroesophageal reflux disease (GERD) is also common, with children experiencing heartburn, regurgitation, or difficulty swallowing. Parents might notice their child avoiding certain foods, complaining of chest pain after eating, or experiencing frequent hiccups. These symptoms can interfere with proper nutrition and growth, making early recognition and management crucial.
Food sensitivities and intolerances may develop as well, with children experiencing adverse reactions to certain foods that don't affect other family members. The combination of digestive issues can lead to nutritional deficiencies if not properly addressed, further complicating the child's overall health and development.
Nutritional Absorption Challenges
Beyond basic digestive symptoms, children showing the 23 signs you grew up with ehlers-danlos syndrome often struggle with nutritional absorption and metabolism issues. The altered connective tissue structure in the intestines can impair the body's ability to properly absorb essential nutrients, leading to deficiencies despite adequate dietary intake.
Common deficiency patterns include low levels of vitamin D, B vitamins, magnesium, and iron. These deficiencies can exacerbate other EDS symptoms, creating a cycle where poor absorption leads to worsening joint pain, fatigue, and healing problems. Children might appear pale, have brittle nails, or show signs of poor wound healing due to these nutritional gaps.
Weight management can also be challenging, with some children struggling to maintain adequate weight due to digestive issues, while others may experience unexplained weight fluctuations. The metabolic irregularities associated with EDS can affect energy levels and growth patterns, making it important for healthcare providers to monitor nutritional status closely.
Parents should work with nutritionists familiar with EDS to develop appropriate dietary strategies and supplementation plans. Regular monitoring of nutrient levels through blood tests can help identify deficiencies early and guide treatment decisions.
Neurological and Cognitive Symptoms
Memory and Concentration Difficulties
Neurological symptoms represent some of the most frustrating aspects of the 23 signs you grew up with ehlers-danlos syndrome because they directly impact academic performance and daily functioning. Children with EDS often experience cognitive difficulties that may be mistakenly attributed to learning disabilities, attention disorders, or lack of effort.
"Brain fog" is a common complaint, characterized by difficulty concentrating, problems with short-term memory, and a general feeling of mental cloudiness. Children might struggle to remember instructions, have difficulty following multi-step directions, or find it hard to stay focused during lessons. These symptoms can be particularly pronounced during periods of physical stress, illness, or fatigue.
Processing speed may also be affected, with children needing more time to complete tasks or understand complex information. This can be especially challenging in academic settings where rapid information processing is expected. Teachers might notice that the child understands concepts when given extra time but struggles with timed assignments or tests.
Sleep disturbances common in EDS can worsen cognitive symptoms, creating a cycle where poor sleep leads to increased brain fog, which then affects the child's ability to function during the day. The combination of physical discomfort and cognitive difficulties can significantly impact a child's self-esteem and academic confidence.
Headaches and Sensory Issues
Frequent headaches and sensory processing difficulties are prominent features among the 23 signs you grew up with ehlers-danlos syndrome. Children with EDS often experience tension headaches, migraines, or cervicogenic headaches related to neck instability and muscle tension from compensating for loose joints.
These headaches can be triggered by various factors including weather changes, physical activity, stress, or even seemingly minor movements. Children might complain of head pain after physical education classes, during growth spurts, or when dealing with academic pressure. The unpredictable nature of these headaches can make it difficult for children to participate fully in school and social activities.
Sensory processing issues are also common, with children showing heightened sensitivity to light, sound, touch, or temperature. They might find classroom lighting too bright, become overwhelmed by noisy environments, or have strong reactions to certain textures in clothing or food. These sensitivities can make everyday situations challenging and may contribute to behavioral difficulties or social withdrawal.
Some children with EDS also experience proprioceptive problems, meaning they have difficulty sensing where their body is in space. This can contribute to clumsiness, frequent falls, or difficulty with fine motor tasks like writing or using utensils.
Sleep and Energy-Related Signs
Chronic Fatigue and Sleep Disorders
Chronic fatigue and sleep disturbances are among the most debilitating aspects of the 23 signs you grew up with ehlers-danlos syndrome. Children with EDS often struggle with various sleep disorders that prevent them from getting restorative rest, leading to persistent tiredness that can't be relieved by normal amounts of sleep.
Sleep onset difficulties are common, with children taking unusually long to fall asleep despite feeling tired. This may be due to physical discomfort from joint pain, restless leg syndrome, or simply an overactive nervous system that has difficulty winding down. Parents might notice their child tossing and turning for hours before finally falling asleep.
Sleep maintenance problems are equally challenging, with frequent nighttime awakenings due to pain, position discomfort, or the need to urinate. The joint hypermobility can make it difficult to find comfortable sleeping positions, and children might wake up feeling stiff or sore despite sleeping for adequate hours. Sleep apnea or other breathing disorders may also occur due to the effects of EDS on airway structures.
The resulting daytime fatigue can be overwhelming, with children feeling exhausted even after what appears to be sufficient sleep. This fatigue often gets worse throughout the day and can significantly impact school performance, social interactions, and participation in activities. Unlike normal tiredness, this fatigue doesn't improve with rest and can be accompanied by flu-like symptoms.
Temperature Regulation Problems
Children displaying the 23 signs you grew up with ehlers-danlos syndrome frequently experience temperature regulation difficulties that can significantly impact their comfort and daily activities. The autonomic nervous system dysfunction common in EDS affects the body's ability to maintain normal temperature, leading to various thermoregulatory problems.
Many children with EDS feel cold most of the time, even in normal room temperatures. They might wear multiple layers of clothing when others are comfortable, or complain about being cold in air-conditioned environments. Conversely, some children experience episodes of feeling overheated or develop heat intolerance that makes outdoor activities or warm weather particularly challenging.
Night sweats and temperature fluctuations during sleep are also common, with children alternating between feeling too hot and too cold throughout the night. This can contribute to sleep disruption and morning fatigue. Parents might notice their child's bedding is frequently damp from sweating, or that the child kicks off covers repeatedly during the night.
These temperature regulation issues can affect school attendance and participation in activities. Children might feel unwell during temperature changes, struggle with outdoor sports, or have difficulty concentrating when they're uncomfortable due to temperature-related symptoms.
Musculoskeletal Complications
Growing Pains and Joint Stiffness
While growing pains are common in childhood, the 23 signs you grew up with ehlers-danlos syndrome include more severe and persistent musculoskeletal symptoms that go beyond typical developmental discomfort. Children with EDS often experience intense leg pains, particularly at night, that can be severe enough to wake them from sleep or prevent them from falling asleep.
These pains are often described as deep, aching sensations in the bones or muscles, particularly in the legs and arms. Unlike normal growing pains that typically occur during periods of rapid growth and then resolve, EDS-related pain tends to be more consistent and may worsen with activity or weather changes. The pain can be so severe that it interferes with walking, playing, or participating in normal childhood activities.
Joint stiffness, particularly in the morning or after periods of inactivity, is another common symptom. Children might complain that their joints feel "rusty" when they first get up, requiring time to loosen up before they can move normally. This paradox of having hypermobile joints that also become stiff can be confusing for both children and their caregivers.
The combination of joint hypermobility and muscle weakness can create a cycle where muscles work overtime to stabilize loose joints, leading to chronic tension, spasms, and fatigue. Children might develop compensatory movement patterns that create additional strain on other body parts, leading to a cascade of musculoskeletal problems.
Frequent Injuries and Slow Healing
A pattern of frequent injuries and delayed healing is a hallmark feature among the 23 signs you grew up with ehlers-danlos syndrome. Children with EDS are often labeled as "accident-prone" or "clumsy," but their increased injury rate is actually due to the structural abnormalities in their connective tissues.
Sprains and strains occur more frequently because the ligaments and tendons that normally provide joint stability are weaker and more stretchy than normal. A minor misstep that wouldn't affect another child might result in a significant ankle sprain or knee injury for a child with EDS. These injuries also tend to take longer to heal and may not heal as completely as expected.
Fractures can also be more common, particularly stress fractures that develop from repetitive activities. The weakened bone structure and altered biomechanics can predispose children to fractures even from relatively minor trauma. When fractures do occur, they may be slow to heal or may not heal properly without appropriate intervention.
Soft tissue injuries like cuts, scrapes, and bruises not only occur more frequently but also heal more slowly and may result in abnormal scarring. Parents often notice that their child's injuries seem to take twice as long to heal compared to siblings, and the resulting scars may be more prominent or have an unusual appearance.
Social and Emotional Impact
School and Social Challenges
The 23 signs you grew up with ehlers-danlos syndrome extend far beyond physical symptoms to include significant social and educational challenges that can profoundly impact a child's development and self-esteem. Children with undiagnosed EDS often struggle in school environments that aren't designed to accommodate their unique needs.
Academic performance may suffer due to a combination of factors including chronic pain, fatigue, cognitive difficulties, and frequent absences for medical appointments or illness. Children might have trouble sitting for long periods due to joint pain, difficulty writing due to hand and wrist problems, or trouble concentrating due to discomfort or brain fog. These challenges can be misinterpreted as behavioral problems or lack of motivation.
Social interactions can be equally challenging, as children with EDS may not be able to participate fully in physical activities or sports that are important for peer bonding. They might be excluded from games, feel different from their classmates, or develop anxiety about participating in activities where they might get injured. The unpredictable nature of their symptoms can also make it difficult to maintain consistent friendships.
Teachers and school staff may not understand the child's needs, particularly if the condition hasn't been diagnosed or isn't well understood. This can lead to inappropriate expectations, inadequate accommodations, or even disciplinary actions for behaviors that are actually symptoms of the underlying condition.
Emotional Regulation Difficulties
Children showing the 23 signs you grew up with ehlers-danlos syndrome often experience emotional regulation challenges that can complicate their social relationships and academic success. The chronic pain, fatigue, and unpredictability of symptoms can create significant emotional stress that manifests in various ways.
Anxiety is particularly common, often stemming from the uncertainty of when symptoms will flare up or worsen. Children might develop anticipatory anxiety about activities, social situations, or school performance. They may become perfectionists, trying to overcompensate for their physical limitations, or conversely, they might give up easily when faced with challenges.
Depression can develop, particularly in older children and adolescents who begin to understand that their experiences are different from their peers. The chronic nature of EDS symptoms, combined with the lack of understanding from others, can lead to feelings of hopelessness or isolation. Children might feel frustrated by their body's limitations or angry about missing out on normal childhood experiences.
Emotional outbursts or meltdowns might occur when children become overwhelmed by physical discomfort, sensory overload, or the stress of trying to function normally despite their symptoms. These episodes are often misunderstood as behavioral problems rather than recognized as responses to chronic illness and discomfort.
Key Signs Summary Table
| Category | Common Signs | Impact Level |
|---|---|---|
| Joint/Muscle | Hypermobility, frequent dislocations, growing pains | High |
| Skin | Hyperextensible, fragile, slow healing | Medium |
| Cardiovascular | Easy bruising, blood pressure issues, palpitations | High |
| Digestive | Chronic constipation, GERD, food sensitivities | Medium |
| Neurological | Brain fog, headaches, sensory issues | High |
| Sleep | Chronic fatigue, sleep disorders, temperature regulation | High |
| Emotional | Anxiety, social challenges, emotional regulation | High |
Recognition and Diagnosis Process
When to Seek Medical Evaluation
Recognizing when to seek medical evaluation for the 23 signs you grew up with ehlers-danlos syndrome can be challenging, especially when symptoms develop gradually or are attributed to other causes. However, certain patterns and combinations of symptoms should prompt parents and healthcare providers to consider EDS as a possibility.
Multiple unexplained symptoms affecting different body systems is often the first clue that something more complex than individual conditions might be at play. When a child experiences joint hypermobility along with skin changes, frequent injuries, digestive problems, and fatigue, it's worth exploring whether these seemingly separate issues might be connected through a connective tissue disorder.
Family history plays an important role, as EDS is inherited. If relatives have similar symptoms, joint problems, or have been diagnosed with EDS or other connective tissue disorders, this increases the likelihood that a child's symptoms might be related to EDS. Even if family members haven't been formally diagnosed, a pattern of similar symptoms across generations can be significant.
The persistence and severity of symptoms should also guide the decision to seek evaluation. While many childhood symptoms are temporary or mild, EDS symptoms tend to be chronic, progressive, and significantly impact daily functioning. When symptoms interfere with school attendance, physical activities, or quality of life, medical evaluation is warranted.
Medical Testing and Specialists
The diagnostic process for confirming the 23 signs you grew up with ehlers-danlos syndrome typically involves multiple healthcare specialists and various testing methods. No single test can diagnose EDS; instead, diagnosis relies on clinical evaluation, family history, and specific criteria established by medical organizations.
A genetics counselor or medical geneticist is often the best starting point for evaluation, as they have specialized knowledge of connective tissue disorders and can conduct comprehensive assessments. These specialists use standardized tools like the Beighton Score to assess joint hypermobility and evaluate other clinical features associated with different types of EDS.
Additional specialists might be involved depending on the child's symptoms, including cardiologists for heart-related issues, gastroenterologists for digestive problems, orthopedic specialists for joint concerns, and neurologists for cognitive or autonomic symptoms. A multidisciplinary approach is often necessary to address the complex nature of EDS.
Genetic testing may be available for some types of EDS, particularly the rarer, more severe forms. However, for the most common type (hypermobile EDS), genetic testing is not currently available, and diagnosis remains based on clinical criteria. Other tests might include echocardiograms, skin biopsies, or specialized imaging studies depending on the suspected type and severity.
Key Takeaways
Understanding the 23 signs you grew up with ehlers-danlos syndrome is crucial for early recognition and appropriate management of this complex condition. The most important points to remember include:
- Early recognition matters: Identifying EDS symptoms in childhood can lead to better management strategies and prevent complications
- Symptoms are multisystem: EDS affects multiple body systems simultaneously, not just joints and skin
- Professional evaluation is essential: Proper diagnosis requires specialized medical assessment and cannot be self-diagnosed
- Family support is crucial: Understanding and accommodating a child's needs can significantly improve their quality of life
- Management is possible: While there's no cure for EDS, appropriate management can help children thrive despite their diagnosis
Conclusion
The journey of recognizing the 23 signs you grew up with ehlers-danlos syndrome can be both enlightening and overwhelming for families. Many parents and adults find relief in finally understanding why certain struggles and symptoms have persisted throughout childhood. While EDS presents significant challenges, early recognition and appropriate management can make a tremendous difference in a child's quality of life and long-term outcomes.
Children with EDS are often remarkably resilient, developing creative coping strategies and demonstrating incredible strength in facing daily challenges. With proper support from healthcare providers, educators, family, and friends, children with EDS can lead fulfilling lives and achieve their goals. The key is understanding their unique needs and providing appropriate accommodations and support.
If you recognize multiple signs from this comprehensive list in your child or are looking back on your own childhood experiences, consider consulting with healthcare professionals who have experience with connective tissue disorders. Early intervention, appropriate medical care, and understanding support systems can help children with EDS navigate their challenges and discover their remarkable strengths.
Remember that each child with EDS is unique, and symptoms can vary significantly between individuals. What matters most is ensuring that children receive the support, understanding, and medical care they need to thrive despite their diagnosis.
Frequently Asked Questions
Q: Can children outgrow Ehlers-Danlos Syndrome? A: No, EDS is a genetic condition that affects connective tissue throughout the body. While symptoms may change over time and management strategies can improve quality of life, children do not outgrow EDS. However, with proper care and accommodations, many children with EDS can lead successful, fulfilling lives.
Q: How early can the 23 signs you grew up with ehlers-danlos syndrome be detected? A: Some signs can be present from infancy, such as hypermobile joints and skin changes. However, many symptoms become more apparent during childhood and adolescence as physical demands increase. The full pattern of symptoms often emerges over several years.
Q: Are all 23 signs necessary for a diagnosis? A: No, children don't need to have all 23 signs to have EDS. Different types of EDS have different diagnostic criteria, and symptom presentation can vary significantly between individuals. A qualified medical professional should evaluate any concerning combination of symptoms.
Q: Is EDS the same as being "double-jointed"? A: While joint hypermobility is a key feature of EDS, being "double-jointed" alone doesn't indicate EDS. EDS involves multiple body systems and includes additional symptoms beyond joint flexibility. True EDS requires comprehensive evaluation by medical professionals.
Q: Can children with EDS participate in sports and physical activities? A: Many children with EDS can participate in physical activities with appropriate modifications and precautions. Low-impact activities like swimming are often recommended, while high-impact or contact sports may need to be avoided or approached with extra caution. Individual assessment is important.
Q: How can schools support children showing the 23 signs you grew up with ehlers-danlos syndrome? A: Schools can provide various accommodations including flexible seating options, modified physical education requirements, extra time for assignments, frequent breaks, and access to elevators. An individualized education plan (IEP) or 504 plan can formalize necessary accommodations.
Q: Is there a cure for EDS? A: Currently, there is no cure for EDS as it's a genetic condition. However, symptoms can be effectively managed through various approaches including physical therapy, medications, lifestyle modifications, and supportive care. Early intervention often leads to better outcomes.