23 signs you grew up with ehlers-danlos syndrome

Living with Ehlers-Danlos syndrome (EDS) shapes every aspect of daily life. This genetic connective tissue disorder affects the body’s building blocks, creating a ripple effect across multiple systems.

Think of connective tissue as the glue holding your body together. In EDS, this glue doesn’t work as well as it should. Your joints might be too flexible, your skin might be extra stretchy, and you might feel pain in places others don’t.

Many people with EDS spend years searching for answers. Doctors often miss the signs because:

• Symptoms can look like other conditions
• Each person experiences EDS differently
• Many healthcare providers lack familiarity with the condition
• Symptoms can change over time

Growing up with EDS means living with a collection of unique experiences. Your body might have been sending signals since childhood – signals that perhaps no one understood at the time.

Ready to connect the dots? Let’s explore 23 tell-tale signs that might reveal you’ve been living with Ehlers-Danlos syndrome all along. These signs could explain many childhood experiences you thought were just “quirks” or “growing pains.”

Learn more about EDS from The Ehlers-Danlos Society

Physical Signs of Growing Up with Ehlers-Danlos Syndrome

Living with extraordinary joint flexibility might seem like a cool party trick at first. Many EDS kids can bend their fingers backward, twist their arms in unusual ways, or sit in positions others find impossible.

Sarah, a 28-year-old EDS patient, shares:

“I used to amaze my friends by touching my thumb to my forearm. I didn’t know this ‘talent’ was actually a sign of something serious.”

Common Physical Signs of Ehlers-Danlos Syndrome (EDS)

Here are some common physical signs that may indicate the presence of Ehlers-Danlos Syndrome:

• Fingers and hands bending beyond normal range
• Elbows and knees that bend backward
• Ability to place palms flat on the floor while standing
• Shoulders that roll out of place easily
• Ankles that twist without warning

These flexible joints come with a price. Joint subluxations happen when bones slip out of place. A simple reach for a cup can end with a shoulder sliding out of position.

How Joint Instability Affects Daily Life

Joint instability creates a ripple effect of problems in the lives of individuals with EDS:

1. Random sprains during everyday activities
2. Frequent falls and trips
3. Difficulty holding pens or opening jars
4. Pain after writing or typing
5. Constant need to crack or adjust joints

Many EDS patients learn to pop their joints back into place. This self-management technique becomes second nature, though it’s not always safe or recommended.

The Body’s Response to Unstable Joints

The body tries to protect unstable joints by tightening muscles. This protection mechanism leads to:

• Muscle spasms
• Stiffness in neck and shoulders
• Lower back pain
• Reduced strength in hands and feet
• Limited endurance for physical activities

Medical Encounters and Challenges Faced by Individuals with EDS

Living with EDS brings a unique set of medical challenges. Many patients spend years visiting different doctors for unexplained pains without getting answers.

“I spent my teenage years bouncing between specialists. Each one had a different theory, but none could explain why I hurt so much.” – Sarah, EDS patient

Common Medical Experiences

Here are some common medical experiences faced by individuals with EDS:

• Multiple visits to different specialists
• Dismissal of symptoms as “growing pains”
• Being labeled as anxious or attention-seeking
• Misdiagnosis with other conditions
• Frustration from healthcare providers unfamiliar with EDS

Physical tasks create daily hurdles for EDS patients. Simple activities like writing or opening jars become major challenges:

Daily Physical Challenges:

• Weak grip strength affecting writing and daily tasks
• Difficulty holding pens or pencils for extended periods
• Struggles with fine motor activities
• Problems with coordination and balance
• Increased fatigue during routine activities

A study from the Journal of Pain Research shows 92% of EDS patients face significant barriers in completing everyday tasks.

“My hands would cramp after writing just one paragraph. Teachers didn’t understand why I couldn’t complete exams on time.” – Mike, diagnosed at age 16

These physical limitations often lead to:

1. Reduced participation in school activities
2. Need for adaptive tools and equipment
3. Modified learning environments, such as adaptive physical education
4. Extra time requirements for tasks
5. Development of alternative strategies

Learn more about EDS management strategies

Systemic Symptoms and Autonomic Nervous System Effects in EDS Patients

Living with Ehlers-Danlos Syndrome (EDS) includes dealing with complex body system issues. The impact reaches far beyond flexible joints.

Common Digestive Challenges

Many EDS patients struggle with eating. Their bodies might reject certain foods or react badly to normal portions. Simple meals can turn into painful experiences.

Common digestive challenges include:

• Stomach pain that comes without warning
• Bloating after small meals
• Frequent nausea
• Acid reflux that won’t go away
• Food sensitivities to many ingredients

Autonomic Nervous System Effects

The autonomic nervous system also plays tricks in EDS bodies. This system controls automatic functions like:

1. Heart rate
2. Blood pressure
3. Body temperature
4. Sweating
5. Digestion

Temperature control becomes a daily battle. Your hands and feet might feel ice-cold while your face burns hot. You might sweat too much or too little.

Signs of Autonomic Dysfunction

Look out for these signs that indicate problems with your autonomic nervous system:

• Getting dizzy when standing up
• Racing heart without exercise
• Feeling faint in hot weather
• Problems regulating body heat
• Excessive sweating or none at all

The Ripple Effect of Body System Issues

These body system issues create a ripple effect in your life:

1. Poor digestion leads to low energy levels.
2. Temperature problems affect the quality of your sleep.
3. Your body works extra hard just to maintain basic functions.

Each person’s experience varies. Some might face severe digestive issues but minimal temperature problems. Others might struggle with both.

Understanding these patterns helps manage daily life with EDS, as these systemic symptoms often extend to the peripheral nervous system, further complicating the overall health picture.

Respiratory, Cardiovascular, and Musculoskeletal Impacts of Ehlers-Danlos Syndrome

Living with EDS brings unique challenges to breathing and heart health. Many people notice lung effects like:

• Shortness of breath during light activities
• Regular chest infections
• Recurring bronchitis or pneumonia
• Collapsed lungs in some cases

The heart and blood vessels need extra care in EDS patients. Common cardiovascular signs include:

• Easy bruising from fragile blood vessels
• Low blood pressure
• Racing heartbeat
• Dizziness when standing up
• Visible veins under thin skin

Foot abnormalities create daily struggles for many EDS patients:

• High arches or completely flat feet
• Ankle rolls and sprains
• Pain when walking or standing
• Need for special shoes or inserts
• Toes that bend unusually

These physical signs often appear early in life. A child might:

• Get tired faster than friends during sports
• Need breaks during physical activities
• Feel pain in feet after short walks
• Show unusual walking patterns
• Struggle with balance

Many EDS patients learn to adapt their activities. Some find relief through:

• Custom orthotics
• Supportive footwear
• Gentle exercises
• Regular rest breaks
• Physical therapy

Blood vessel fragility needs careful monitoring. Simple activities might cause:

• Unexplained bruising
• Small blood vessel breaks
• Slow healing cuts
• Delicate skin tears

Emotional, Social, and Other Aspects of Living with Ehlers-Danlos Syndrome

Living with EDS creates unique emotional challenges. Many patients describe feeling misunderstood when others can’t see their invisible pain.

Common emotional experiences include:

• Anxiety about potential injuries
• Frustration with daily task limitations
• Fear of judgment from peers
• Isolation due to activity restrictions
• Depression linked to chronic pain

Pain sensitivity in EDS patients reaches beyond physical discomfort. Simple touches can trigger intense pain responses. A gentle hug might feel like crushing pressure.

Social interactions often require careful navigation. Many EDS patients learn to:

• Choose activities that won’t strain their bodies
• Explain their limits to friends
• Find alternative ways to participate
• Build support networks who understand

Bladder sensitivity affects many EDS patients, leading to:

• Frequent bathroom visits
• Unexpected urgency
• Night-time disruptions
• Social activity planning around bathroom access

The impact on self-image runs deep. Young people with EDS might feel different from their peers. They often develop remarkable resilience and adaptability.

These experiences shape identity formation. Many EDS patients become:

• Strong advocates for their health needs
• Empathetic listeners
• Creative problem solvers
• Skilled communicators with medical professionals

Physical symptoms intertwine with psychological experiences. Pain flares can trigger emotional responses. Emotional stress can worsen physical symptoms.

Delayed Diagnosis Challenges in Ehlers-Danlos Syndrome

Getting a correct diagnosis for Ehlers-Danlos Syndrome can take many years. Medical professionals often miss the signs of EDS due to limited knowledge about this condition.

Common misdiagnosis patterns include:

• Doctors labeling symptoms as “growing pains”
• Mental health professionals suggesting anxiety or depression
• Healthcare providers dismissing joint pain as sports injuries
• Attributing symptoms to “attention-seeking behavior”

Many EDS patients face a frustrating cycle of doctor visits without answers. The average time from first symptoms to diagnosis spans 10-20 years.

Several factors contribute to delayed EDS diagnosis:

1. Symptoms appear gradually over time
2. Each patient shows different combinations of symptoms
3. Many doctors receive minimal training about EDS
4. Standard tests might not catch EDS markers
5. Insurance barriers limit access to specialists

The lack of awareness creates a challenging path for patients seeking help. Some doctors might focus on treating individual symptoms without connecting them to EDS.

A study by The Ehlers-Danlos Society shows that patients visit an average of 7 different specialists before receiving an EDS diagnosis.

Young patients struggle to communicate their symptoms. Parents might hear “they’ll grow out of it” when seeking medical help for their children with EDS signs.

Recognizing these diagnostic challenges helps validate the experiences of people living with undiagnosed EDS. Better education among healthcare providers can lead to earlier identification of these 23 signs you grew up with ehlers-danlos syndrome.

Management Strategies for Individuals Living with Ehlers-Danlos Syndrome

Living with EDS requires a well-rounded approach to care. Supportive care in EDS management starts with building a healthcare team who understands your needs.

Key Components of EDS Management:

• Physical therapy designed for hypermobile joints
• Regular exercise programs that focus on muscle strength
• Proper bracing and support devices for unstable joints
• Pain management techniques, both medical and non-medical
• Mental health support to cope with chronic conditions

Daily Life Adjustments:

• Using ergonomic tools and equipment
• Modifying work and study environments
• Implementing energy conservation techniques
• Planning rest periods between activities
• Wearing compression garments when needed

Your care team might include:

1. Primary care physician
2. Physical therapist
3. Occupational therapist
4. Pain management specialist
5. Mental health professional
6. Nutritionist

Many people with EDS find relief through gentle activities like:

• Swimming
• Pilates
• Tai Chi
• Modified yoga
• Water therapy

Creating a support network helps manage daily challenges. This includes family members, friends, and support groups who understand EDS. Support groups provide valuable resources and emotional connections.

Strengths Associated with Hypermobility in Individuals with Ehlers-Danlos Syndrome

Living with Ehlers-Danlos Syndrome (EDS) brings unique abilities that showcase the resilience in hypermobile individuals. Many people with EDS develop remarkable problem-solving skills through daily adaptations.

These strengths include:

• Enhanced Body Awareness: People with EDS often develop deep understanding of their body mechanics
• Creative Solutions: Finding new ways to perform tasks leads to innovative thinking
• Empathy: Living with invisible symptoms creates deeper understanding for others’ struggles
• Mental Toughness: Managing daily challenges builds psychological resilience
• Flexibility in Thinking: Adapting to changing symptoms develops mental adaptability

Many hypermobile individuals excel in:

1. Dance
2. Yoga
3. Gymnastics
4. Swimming
5. Martial arts

Their unique physical abilities can create opportunities in performing arts or athletics when properly managed. This adaptability extends beyond physical activities into daily life solutions.

Research shows people with EDS often display:

• Strong organizational skills
• Detail-oriented thinking
• Quick problem-solving abilities
• High emotional intelligence
• Natural leadership qualities

These strengths emerge from years of navigating complex symptoms. The EDS community demonstrates how challenges can foster remarkable capabilities and inner strength.

Conclusion

Living with EDS shapes our experiences in unique ways. Each person’s journey with this condition tells a different story of strength, adaptation, and resilience.

These 23 signs you grew up with ehlers-danlos syndrome paint a picture many can relate to:

• The childhood “party tricks” that made us popular at school
• Those unexplained aches that doctors dismissed
• The creative ways we learned to manage daily tasks
• Our remarkable ability to bounce back from setbacks

Your experiences are valid and your struggles are real. Your adaptations are ingenious.

We invite you to:

1. Share your story with others who might feel alone in their journey
2. Connect with EDS support groups in your area
3. Educate healthcare providers about your experiences
4. Document your symptoms to help future medical discussions

“Every person with EDS adds a vital piece to the puzzle of understanding this condition better.”

Let’s work together to create a healthcare system that recognizes EDS earlier in life. Your voice matters in building awareness and improving care for future generations.

Remember: You’re not just surviving – you’re pioneering understanding for others with EDS.

Join the EDS Society to connect with others and help spread awareness about this condition.

FAQs (Frequently Asked Questions)

What is Ehlers-Danlos Syndrome (EDS) and how does it affect the body?

Ehlers-Danlos Syndrome (EDS) is a connective tissue disorder that impacts multiple body systems. It commonly presents with extraordinary joint flexibility, frequent joint subluxations or dislocations, and systemic symptoms such as digestive issues, temperature sensitivity, and cardiovascular effects like blood vessel fragility.

What are common physical signs indicating someone may have grown up with EDS?

Common physical signs include extraordinary joint flexibility, frequent joint subluxations or dislocations, joint instability, sprains, and musculoskeletal challenges such as foot abnormalities. These signs often manifest early in life and can significantly impact daily activities.

Why is diagnosing EDS often challenging and frequently delayed?

Diagnosing EDS is challenging due to its wide range of symptoms affecting various body systems and the lack of awareness among healthcare professionals. Misdiagnosis is common because symptoms like unexplained pains and autonomic nervous system effects can mimic other conditions, leading to delayed recognition.

How does EDS affect the autonomic nervous system and other systemic functions?

EDS can lead to systemic symptoms including digestive issues, food sensitivities, temperature sensitivity, bladder sensitivity, and heightened pain sensitivity. These manifestations reflect the disorder’s impact on the autonomic nervous system and overall bodily functions.

What emotional and social challenges do individuals with EDS face?

Individuals with EDS often experience heightened pain sensitivity which can affect emotional well-being. Socially, they may face challenges related to their physical limitations and chronic symptoms. However, many develop resilience and creativity as strengths alongside their hypermobility.

What management strategies are recommended for living with EDS?

Supportive care is essential in managing EDS symptoms. This includes tailored physical therapy to improve joint stability, pain management strategies, regular medical monitoring for cardiovascular and respiratory issues, and raising awareness within healthcare communities to facilitate early diagnosis and comprehensive care.