Growing up can be challenging for any child, but for those with Ehlers-Danlos syndrome (EDS), childhood often comes with unique experiences that may not be recognized until much later in life. 23 signs you grew up with ehlers-danlos syndrome can help individuals understand their past experiences and potentially seek proper medical attention. This comprehensive guide explores the telltale signs that may indicate you lived with this connective tissue disorder during your formative years.
Ehlers-Danlos syndrome is a group of inherited disorders that affect connective tissues, primarily the skin, joints, and blood vessel walls. Many people with EDS go undiagnosed for years or even decades, often dismissed as being "clumsy" or "dramatic" about their pain. Understanding these signs can provide validation and potentially lead to proper diagnosis and treatment.
Understanding Ehlers-Danlos Syndrome in Childhood
Ehlers-Danlos syndrome manifests differently in each individual, making it particularly challenging to diagnose during childhood. The condition affects the body's connective tissue, which provides structure and support to skin, joints, blood vessels, and internal organs. When connective tissue is defective, it can lead to a wide range of symptoms that often develop gradually over time.
Children with EDS frequently experience symptoms that are brushed off as normal childhood mishaps or growing pains. Parents and healthcare providers may not recognize the pattern of symptoms that point to an underlying connective tissue disorder. This lack of recognition can lead to years of unexplained pain, injuries, and medical concerns that seem unrelated but are actually manifestations of the same underlying condition.
The 23 signs you grew up with ehlers-danlos syndrome encompass physical, emotional, and social aspects of childhood that may have been affected by this condition. These signs often overlap and interconnect, creating a complex picture of childhood experiences that make more sense when viewed through the lens of EDS. Understanding these patterns can be incredibly validating for adults who struggled with unexplained symptoms throughout their youth.
Physical Signs and Symptoms
Frequent Joint Dislocations and Subluxations
One of the most telling signs of growing up with EDS is experiencing frequent joint dislocations or subluxations (partial dislocations) during childhood. Children with EDS often have joints that move beyond the normal range of motion, making them prone to popping out of place during routine activities. This hypermobility might have been dismissed as being "double-jointed" or unusually flexible.
These dislocations commonly affected shoulders, knees, ankles, and fingers, often occurring during sports, playground activities, or even simple movements like reaching for objects. What made these incidents particularly concerning was how easily they happened and how frequently they recurred. Unlike typical childhood injuries that result from significant trauma, EDS-related dislocations could occur from minimal force or even spontaneous movement.
The ability to relocate joints independently or having family members who knew how to "pop them back in" became a normal part of childhood. This normalization of frequent dislocations is one of the key 23 signs you grew up with ehlers-danlos syndrome that many people don't recognize as abnormal until much later in life.
Chronic Pain That Wasn't Taken Seriously
Growing up with unexplained chronic pain is another significant indicator of childhood EDS. Many children with this condition experience persistent aches and pains that adults often dismissed as "growing pains" or attention-seeking behavior. The pain typically affected multiple areas of the body simultaneously and could vary in intensity from day to day.
This chronic pain often felt different from typical childhood injuries. It might have been described as deep, aching, burning, or stabbing sensations that seemed to move around the body. The pain frequently worsened with weather changes, physical activity, or stress, creating patterns that confused both the child and their caregivers.
Unfortunately, many children with EDS learned to minimize or hide their pain because they were told they were being dramatic or that nothing was wrong. This dismissal of legitimate pain created lasting psychological impacts and delayed proper diagnosis and treatment. The experience of having chronic pain invalidated during childhood is a common thread among adults diagnosed with EDS later in life.
Unusual Skin Characteristics
Children who grew up with EDS often displayed distinctive skin characteristics that set them apart from their peers. The skin might have been notably soft, velvety, or stretchy beyond normal limits. Many could stretch their skin several inches away from their body, particularly on their arms, hands, or face, creating a party trick that amazed friends and family.
Bruising easily and frequently was another common experience, often leading to concerning patterns of bruises that appeared with minimal trauma or sometimes without any remembered injury. These bruises might have been unusually large, dark, or slow to heal, raising questions from teachers, coaches, or other adults who noticed the frequent discoloration.
The skin might also have healed poorly from cuts and scrapes, creating widened or atrophic scars that remained visible long after the initial injury. Some children developed stretch marks at young ages or in unusual locations, even without significant weight changes or growth spurts that typically cause such markings.
Digestive and Internal Symptoms
Gastrointestinal Issues Throughout Childhood
Many individuals who experienced 23 signs you grew up with ehlers-danlos syndrome recall having persistent digestive problems that seemed to have no clear cause. These issues often began in early childhood and continued throughout adolescence, creating ongoing discomfort and nutritional concerns that affected daily life and social activities.
Chronic constipation was frequently reported, often requiring regular medication or dietary interventions to manage. Some children experienced the opposite problem with frequent diarrhea or alternating patterns of constipation and loose stools. Abdominal pain, bloating, and nausea were common complaints that might have been diagnosed as irritable bowel syndrome or dismissed as stress-related.
Food intolerances and sensitivities often developed during childhood, leading to restricted diets or frequent stomach upset after eating certain foods. Some children experienced delayed gastric emptying, making them feel full quickly or causing food to "sit" uncomfortably in their stomach for extended periods. These digestive issues often impacted social situations, school attendance, and overall quality of life during crucial developmental years.
Fatigue and Energy Issues
Persistent fatigue that seemed disproportionate to activity levels was another common experience among children with undiagnosed EDS. This wasn't typical childhood tiredness after a busy day but rather a deep, overwhelming exhaustion that rest didn't seem to resolve. Many children required more sleep than their peers or struggled to wake up in the morning despite adequate sleep duration.
The fatigue often worsened after physical activity, leading to what might now be recognized as post-exertional malaise. Children might have needed to rest after playing sports or engaging in activities that their peers found energizing. This fatigue pattern often led to being labeled as lazy or unmotivated, when in reality, their bodies were working harder than normal to maintain basic functions.
Energy levels might have fluctuated dramatically throughout the day, with some children experiencing bursts of energy followed by crashes that left them unable to concentrate or participate in activities. This inconsistent energy pattern made it difficult to maintain consistent performance in school or extracurricular activities, often leading to frustration and misunderstanding from adults.
Cardiovascular and Autonomic Signs
Heart Rate and Blood Pressure Irregularities
Children with EDS often experience cardiovascular symptoms that might not have been recognized as related to their connective tissue disorder. Rapid heart rate, particularly when standing up or during mild exertion, was a common experience that might have been dismissed as anxiety or poor physical conditioning.
Some children experienced episodes of feeling faint, dizzy, or lightheaded, especially when changing positions from lying to sitting or sitting to standing. These symptoms might have been accompanied by visual changes, such as seeing spots or having vision temporarily dim or tunnel. Blood pressure irregularities, including both high and low readings, might have been noted during routine medical visits.
Heart palpitations or the sensation of the heart skipping beats, racing, or pounding could occur without obvious triggers. These episodes might have been particularly noticeable during times of stress, illness, or hormonal changes. Many children learned to manage these symptoms by sitting down when they felt dizzy or avoiding rapid position changes, developing coping strategies without understanding the underlying cause.
Temperature Regulation Problems
Difficulty regulating body temperature was another subtle but significant sign that many people with EDS experienced during childhood. These children might have been consistently cold, requiring extra layers of clothing even in mild weather, or conversely, they might have overheated easily and struggled to cool down effectively.
Some children experienced episodes of feeling hot and cold simultaneously or had body parts that felt different temperatures. Hands and feet might have been chronically cold, sometimes with color changes that indicated poor circulation. Excessive sweating or inability to sweat appropriately could also occur, making temperature regulation even more challenging.
These temperature regulation issues often affected sleep quality, comfort in various environments, and participation in outdoor activities. Children might have needed special accommodations at school or struggled with seasonal changes that their peers handled easily. The impact of these symptoms on daily life was often underestimated by adults who didn't understand the connection to an underlying medical condition.
Neurological and Cognitive Aspects
Concentration and Memory Challenges
Many individuals reflecting on 23 signs you grew up with ehlers-danlos syndrome remember having unexplained difficulties with concentration and memory that seemed inconsistent with their intelligence level. These cognitive issues might have been attributed to attention deficit disorders, laziness, or lack of motivation when they were actually related to the neurological aspects of EDS.
"Brain fog" was a common experience, characterized by feeling mentally cloudy, having difficulty finding words, or struggling to process information at normal speeds. This cognitive cloudiness might have fluctuated throughout the day or been worse during times of physical stress or illness. Many children developed compensatory strategies to work around these mental challenges without understanding why they needed them.
Memory problems often included difficulty with both short-term working memory and long-term recall. Children might have forgotten instructions moments after hearing them, struggled to remember sequences of tasks, or had difficulty retaining information they had previously learned well. These memory issues often impacted academic performance and created frustration for both the child and their teachers.
Sensory Processing Differences
Sensory processing differences were common among children who later discovered they had EDS. These might have included heightened sensitivity to light, sound, touch, or other sensory inputs that made certain environments uncomfortable or overwhelming. Clothing textures, food textures, or environmental factors like fluorescent lights might have caused significant distress.
Some children experienced the opposite problem with decreased sensitivity to certain sensations, particularly pain or temperature. This hyposensitivity might have led to injuries going unnoticed or difficulty recognizing when something was wrong with their body. The combination of hypersensitivity in some areas and hyposensitivity in others created a complex sensory profile that was often misunderstood.
Proprioception, or the awareness of body position in space, was frequently affected in children with EDS. This might have manifested as clumsiness, frequent bumping into objects, difficulty with activities requiring precise movements, or challenges with spatial awareness. These issues often improved with conscious effort and practice but required more energy and attention than typical childhood motor skills development.
Social and Emotional Impact
Feeling Different from Peers
Growing up with undiagnosed EDS often created a persistent sense of being different from peers in ways that were difficult to explain or understand. Children might have felt isolated by their physical limitations, chronic pain, or frequent medical appointments that set them apart from typical childhood experiences.
The inability to participate fully in sports, playground activities, or social events due to pain, fatigue, or injury risk often led to feelings of exclusion and disappointment. Many children learned to watch from the sidelines or found alternative ways to participate that accommodated their physical limitations. This pattern of adaptation and accommodation became a lifelong skill but also reinforced feelings of being different.
Social relationships might have been affected by the unpredictability of symptoms, leading to cancelled plans, missed events, or the need for special accommodations that peers didn't understand. The challenge of explaining symptoms that weren't visible or easily understood often led to feelings of being misunderstood or not believed by friends, teachers, and sometimes even family members.
Academic and School Challenges
School experiences for children with undiagnosed EDS often involved unique challenges that weren't recognized or accommodated appropriately. Frequent absences due to illness, injuries, or medical appointments might have created gaps in learning or social connections that were difficult to overcome.
Physical education classes often presented particular difficulties, with children experiencing injuries, pain, or exhaustion that seemed disproportionate to the activities involved. Some children excelled at certain sports or activities but struggled with others in ways that seemed inconsistent, leading to confusion about their athletic abilities and potential.
Handwriting difficulties were common, often attributed to poor fine motor skills or lack of effort when they were actually related to joint hypermobility, pain, or proprioceptive challenges. Some children developed compensatory grips or writing positions that helped them complete written work but might have looked unusual to teachers and peers.
Key Takeaways
Understanding the 23 signs you grew up with ehlers-danlos syndrome can provide valuable insight into childhood experiences that may have seemed confusing or unexplained at the time. These signs often interconnect and reinforce each other, creating a pattern of symptoms that makes more sense when viewed as manifestations of a connective tissue disorder.
Recognition of these signs can lead to:
- Validation of childhood experiences that were dismissed or misunderstood
- Better understanding of current symptoms and health challenges
- Motivation to seek proper medical evaluation and diagnosis
- Improved self-advocacy and communication with healthcare providers
- Connection with others who share similar experiences
Comprehensive Sign Checklist
| Physical Signs | Internal/Systemic Signs | Neurological Signs |
|---|---|---|
| Joint dislocations/subluxations | Chronic digestive issues | Concentration difficulties |
| Chronic unexplained pain | Persistent fatigue | Memory problems |
| Easy bruising | Heart rate irregularities | Sensory processing differences |
| Stretchy, soft skin | Temperature regulation problems | Brain fog episodes |
| Poor wound healing | Blood pressure changes | Proprioception challenges |
| Early stretch marks | Frequent infections | Sleep disturbances |
| Dental problems | Food intolerances | Headaches/migraines |
| Vision problems | Frequent urination | Balance issues |
Seeking Professional Help
If you recognize multiple signs from this list in your own childhood experiences, it may be worth discussing the possibility of EDS with a healthcare provider. While this article provides educational information, only qualified medical professionals can provide proper diagnosis and treatment recommendations.
According to recent research highlighted by bigwritehook.co.uk Blog, early diagnosis and appropriate management of EDS can significantly improve quality of life and prevent complications. Finding healthcare providers who are knowledgeable about connective tissue disorders is crucial for receiving appropriate care and support.
Consider keeping a symptom journal, gathering family medical history, and preparing specific examples of childhood experiences that align with EDS symptoms. This preparation can help healthcare providers better understand your concerns and provide more targeted evaluation and care.
Frequently Asked Questions
Q: Can children be diagnosed with Ehlers-Danlos syndrome? A: Yes, children can be diagnosed with EDS, though diagnosis is often delayed because symptoms may be attributed to normal childhood development or other conditions. Early diagnosis can help prevent complications and provide appropriate support.
Q: Are the 23 signs you grew up with ehlers-danlos syndrome the same for everyone? A: No, EDS affects individuals differently, and not everyone will experience all signs. The combination and severity of symptoms vary significantly between people, even within the same family.
Q: Is it too late to get diagnosed with EDS as an adult? A: It's never too late to pursue an EDS diagnosis. Many people are diagnosed in adulthood after years of unexplained symptoms. Proper diagnosis can lead to better management and improved quality of life at any age.
Q: Can growing up with undiagnosed EDS cause psychological effects? A: Yes, growing up with chronic pain, frequent injuries, and dismissed symptoms can lead to anxiety, depression, medical trauma, and difficulty trusting one's own body. Mental health support is an important part of comprehensive EDS care.
Q: What should I do if I suspect I had EDS as a child? A: Consider consulting with a healthcare provider familiar with connective tissue disorders. Bring documented examples of childhood symptoms, family history, and current concerns to support your discussion.
Conclusion
Recognizing the 23 signs you grew up with ehlers-danlos syndrome can be both validating and overwhelming for individuals who spent their childhood feeling different, misunderstood, or dismissed. These signs represent common experiences among people with EDS, highlighting the importance of awareness and proper medical evaluation.
Understanding these patterns can help individuals advocate for themselves, seek appropriate medical care, and connect with others who share similar experiences. While growing up with undiagnosed EDS presented unique challenges, recognition and proper management can significantly improve current and future health outcomes.
The journey from unexplained childhood symptoms to understanding and managing EDS is often long and complex, but increased awareness and medical understanding are making diagnosis more accessible than ever before. If you recognize yourself in these descriptions, remember that your childhood experiences were valid, your symptoms were real, and help is available to support your health and well-being moving forward.