Check These 23 Signs To See If You Grew Up With Ehlers-Danlos Syndrome

23 signs you grew up with ehlers-danlos syndrome

Ehlers-Danlos Syndrome (EDS) is a rare genetic disorder characterized by connective tissue defects that can affect multiple body systems. It weakens blood vessels, skin, and joints, resulting in joint hypermobility, skin fragility, and easy bruising. Additionally, people with EDS may experience chronic pain and fatigue.

Symptoms of EDS can vary widely from person to person and often go undiagnosed or misdiagnosed for years. The diagnosis of EDS is typically made through a physical examination and family history evaluation. Genetic testing may also be performed if necessary.

People with EDS require specialized care from healthcare professionals knowledgeable about the condition. For example, physical therapy can help manage joint pain and prevent dislocations, while surgical interventions may be required in severe cases.

Pro Tip: If you suspect that you or a loved one may have Ehlers-Danlos Syndrome, seek evaluation from a healthcare professional with expertise in this area. Early diagnosis and management can improve outcomes and quality of life.

Growing up with EDS was like a constant game of ‘how many dislocations can you have before lunch?’

Signs of EDS in Childhood

In medicine, Ehlers-Danlos Syndrome (EDS) is a rare genetic condition affecting the body’s connective tissues. These tissues are responsible for supporting the skin, muscles, and bones. Therefore, signs of EDS in Childhood are crucial since the early identification of this syndrome can prevent severe complications and manage symptoms. Below are four key points to recognize the signs of EDS in Childhood.

  • Children with EDS may present with hypermobility and flexibility of the joints that can cause easy dislocations, sprains, and pain in the limbs and back.
  • Children with EDS may show features of delayed motor milestones, such as sitting, crawling, or standing.
  • Children with EDS often have fragile skin prone to bruising, scarring, and slow healing wounds.
  • Children with EDS may suffer from migraines, chronic fatigue, sleep disorders, anxiety, and depression.

It is important to note that these signs may differ in intensity and presence in different types of EDS. Therefore, children with the above symptoms should undergo a medical examination to prevent long-term complications.

EDS has been known for over 200 years when a Dutch physician, Johannes Andreas Vesalius, described a patient with extremely elastic skin in 1824. Over time, scientific advancements have explored different types of EDS and classified it into 13 subtypes. The diagnosis of EDS is mainly based on clinical assessments and genetic testing. Educating the public and healthcare providers about the signs of EDS in childhood can improve the quality of life for those affected by this rare syndrome.

“You know you have Ehlers-Danlos Syndrome when dislocating your joints is as routine as brushing your teeth.”

Joint Hypermobility

Individuals with unusually flexible body joints and excessive range of motion are likely to have laxity in their joint structures. This can result in Joint Hyperlaxity, where the ligaments that support the joints are loose, leading to joint instability and pain. Joint hyperlaxity can affect children, and it is often seen as Joint Hypermobility.

Joint Hypermobility is a common sign of Ehlers-Danlos Syndrome (EDS) in children. Children with EDS may experience increased joint flexibility and difficulty with daily activities, such as walking or holding things. Also, they may suffer from fatigue or muscle stiffness upon exercise or exertion.

A genetic connective tissue disorder that primarily affects the skin and joints, EDS has several subtypes with varying symptoms and severity.

Clinicians must recognize early signs of Joint Hypermobility to properly evaluate these patients for potential EDS diagnoses. Orthopedic evaluations, genetic testing, skin biopsies, echocardiograms may aid in diagnosis confirmation. In addition, early diagnosis helps facilitate treatment planning and avoid complications like dislocations or subluxations.

Pro Tip: Physical therapy improves muscle tone and strengthens the supporting musculature around the affected areas which may help alleviate related symptoms.

Braces or not, EDS kids know how to keep their dentists on their toes.

Dental Issues

Children with EDS may experience various dental problems due to the disorder’s impact on connective tissues. These issues can range from delayed tooth eruption, overcrowding, misaligned teeth, gum issues, and fragile enamel. Additionally, certain dental procedures may be more complicated due to weak gums or a high risk of injuries.

Parents or caregivers of children with EDS should be aware of these potential dental issues and seek prompt professional consultation if any symptoms occur. Leaving these problems untreated may lead to severe complications in the future which can harm the child’s overall oral health.

It is important to note that dental problems are not necessarily present in all cases of EDS. However, regular oral examinations by a dentist specializing in connective tissue disorders are recommended for early detection and management of potential issues.

As a parent or caregiver, staying informed and taking action when necessary to ensure the best possible outcomes for your child’s oral health is crucial. Don’t let fear of the unknown keep you from seeking professional help – early intervention is key in managing EDS related dental issues.

Looks like little Timmy might need glasses AND hearing aids, but at least he’ll be able to hear the sound of his joints popping from a mile away.

23 signs you grew up with ehlers-danlos syndrome

23 signs you grew up with ehlers-danlos syndrome

Children with Ehlers-Danlos Syndrome (EDS) often experience various sensory and neurological symptoms. One common sign is difficulties with vision and/or hearing. This could manifest as blurred or double vision, light sensitivity, ear ringing, or difficulty hearing certain frequencies.

In addition to these general symptoms, some children may also experience migraines related to visual or auditory input changes. While these symptoms can be distressing for the child, there are ways to manage them. For example, using tinted glasses or earplugs can relieve sensory overload.

Parents and caregivers must watch for signs of vision and hearing issues in children with EDS. Early detection and intervention can improve these children’s outcomes and quality of life.

Simple lifestyle modifications such as turning down bright lights or reducing noise levels can also be helpful. Medical interventions like cochlear implants or corrective eyewear may be necessary in severe cases.

If your child’s teeth are constantly popping out like a game of Whack-a-Mole, it might be time to consider if EDS is the real tooth fairy in disguise.

Dental Issues

Signs of Ehlers-Danlos Syndrome (EDS) can be noticed in childhood, with dental issues being one of the potential indicators. EDS may cause teeth to be poorly formed or positioned, leading to overcrowding and crookedness. In addition, tooth enamel may be thin and easily damaged.

Furthermore, children with EDS often experience joint hypermobility, so they may have difficulty keeping their mouth open for an extended period during dental procedures. This can result in anxiety and discomfort for the child and dental professional.

Parents may sometimes report difficulties with their child brushing their teeth due to oral hypersensitivity or intolerance of certain textures or flavors. These challenges may increase the risk of cavities and gum disease if not addressed properly.

Caregivers must address these issues early on, as they can impact a child’s oral health and well-being. In addition, communication with dental professionals can help ensure appropriate accommodations to provide a comfortable and effective experience for the child during dental visits.

A young girl with suspected EDS presented with poor tooth formation and sensitivity at a routine checkup despite excellent oral hygiene habits. After further evaluation, her pediatrician diagnosed her with EDS Type III (Hypermobility Type). Ongoing monitoring of her orthodontic development ensured that treatment plans were adapted appropriately based on her unique needs.

If your child’s feet are flatter than your grandma’s pancakes, it might indicate EDS.

Flat Feet

Flat feet, a common condition in children, can also indicate Ehlers-Danlos syndrome (EDS).

  • Children with EDS may have flat feet due to weakened ligaments and tendons.
  • Flat feet may affect a child’s ability to walk or run properly.
  • If you notice your child walking on the inner arches of their feet, it could indicate an underlying issue such as EDS.

However, it is important to note that not all children with flat feet have EDS. Other conditions such as obesity or tight muscles may also cause flat feet. Therefore, parents must talk to their child’s doctor to rule out any underlying health concerns.

If left untreated, EDS can cause joint dislocations, chronic pain and other health complications. Early diagnosis and intervention can significantly improve prognosis. Therefore, if you suspect your child has EDS or any related symptoms, do not hesitate to seek medical attention promptly.

If your child’s heart is racing even faster than their video game score, it might be time to consider EDS as a possible culprit.

23 signs you grew up with ehlers-danlos syndrome

Heart Implications

Semantically Analyzing Heart Implications in Children with EDS:

Experts warn parents to monitor their children’s hearts if they suspect Ehlers-Danlos Syndrome (EDS).

Heart Implications Evaluation Treatment

Valvular heart disease        Echocardiogram Surgical repair or replacement of the valve, prophylactic antibiotics, anticoagulation therapy (rare)

Aneurysms and dissections        Magnetic resonance angiography/computed tomography angiography (MRA/CTA), echocardiogram, magnetic resonance imaging (MRI)        If aneurysms/dissections are observed, blood pressure control, surgical intervention when necessary

Arrhythmias Electrocardiogram (ECG), Holter monitor, event recorder        Medications including beta-blockers, pacemaker/cardioverter defibrillator implantation in certain cases.

Medical evaluations are essential as these heart conditions can be fatal in severe cases of EDS.

Research data shows that people with EDS have a higher risk of cardiovascular disorders than the general population. So watch out for the teen who can bend like a pretzel – they might have more than just flexibility as a superpower.

Signs of EDS in Adolescence

Signs of Ehlers-Danlos Syndrome (EDS) in Adolescence are often overlooked and can delay diagnosis. Below are three indicators that may suggest the presence of EDS in Adolescents:

  • Joint Hypermobility – Adolescents who can bend their limbs beyond the normal range of motion may have joint hypermobility, a common characteristic of EDS.
  • Chronic Pain – Adolescents who experience chronic pain in their joints, muscles, or bones could potentially have EDS. Pain may occur spontaneously or be triggered by movement or pressure.
  • Frequent Dislocations – Adolescents who experience frequent dislocations or subluxations of their joints may have EDS. Joints may dislocate easily and spontaneously, or with minimal trauma.

It is important to note that not every adolescent with EDS will exhibit all three indicators, and there are many other potential signs and symptoms. Therefore, if an adolescent is experiencing any unexplained pain or joint instability, it is essential to consult a medical professional.

It is also crucial for parents, caregivers, and medical professionals to be aware of the potential signs of EDS in Adolescence, as an early diagnosis can improve outcomes and prevent further injury or complications.

If an adolescent is experiencing any of the signs listed above, seek medical attention promptly to ensure proper diagnosis and management. However, do not wait until it is too late to address potential health concerns and future complications.

Who needs a chiropractor when you grew up with Ehlers-Danlos Syndrome and have chronic joint pain as a built-in feature?

Chronic Joint Pain

Experiencing persistent discomfort and joint inflammation can indicate Ehlers-Danlos Syndrome (EDS) amongst adolescents. This condition results from a genetic collagen dysfunction, resulting in joint hypermobility that often causes chronic joint pain.

In addition to joint pain, other symptoms may present themselves in conjunction with EDS. For example, this condition could cause poor wound healing, frequent skin bruises, and gastrointestinal problems like bloating, constipation or diarrhea.

It’s essential for healthcare providers to carefully note and tenderly address all symptoms of EDS to provide proper treatment. Referral to a geneticist is also recommended for confirmation diagnosis.

Pro Tip: Early diagnostic intervention can improve long-term outcomes in adolescents diagnosed with Ehlers-Danlos Syndrome.

It looks like adolescence isn’t the only time we’re prone to fainting – POTS makes us dizzy and dropping like it’s hot.


Autonomic dysfunction is a condition that affects the body’s ability to regulate its functions. Teenagers experiencing this condition may have increased heart rate, dizziness, fatigue and fainting symptoms. This condition is known as Postural Orthostatic Tachycardia Syndrome (POTS).

The symptoms of POTS can be triggered by prolonged standing or sitting and are relieved when lying down. For diagnosis, doctors use a tilt-table test, which measures changes in blood pressure and heart rate when a patient is moved from lying down to standing. Treatment involves increasing salt intake, drinking plenty of fluids, and medication to regulate heart rate.

It is important for parents of teenagers who display symptoms of POTS to consult a doctor for proper diagnosis and treatment. Proper management can improve their quality of life and prevent long-term complications.

One mother shared her story about her daughter who experienced frequent dizziness and fatigue during adolescence. After several tests, including the tilt-table test, she was diagnosed with POTS. With added salt intake and medication prescribed by her doctor, her daughter could return to a normal daily routine without fearing debilitating symptoms.

Autonomic Dysfunction: where your body decides to go rogue and make you feel like a constant rollercoaster. #fun.

23 signs you grew up with ehlers-danlos syndrome

Individual Therapy

Individual counseling is an effective therapeutic intervention for individuals with Ehlers-Danlos Syndrome (EDS) and their families. This kind of therapy offers personalized support and helps patients explore their feelings, concerns, and challenges related to EDS. The therapist can also provide education on coping strategies, pain management techniques, and self-care practices.

Furthermore, individual therapy can help the patient improve communication skills, build self-esteem, manage stress & anxiety, reduce depressive symptoms and enhance overall well-being. Additionally, it facilitates the development of a supportive relationship between the patient and therapist that fosters trust, respect & empathy towards the patient’s condition.

Moreover, fewer distractions during individual therapy sessions allow more effective communication and address specific needs of EDS patients. Selecting a therapist with experience working with EDS patients is essential as it involves some unique considerations.

Some suggestions to make individual counseling work are:

  • Setting up realistic goals together with the therapist before starting sessions;
  • Prioritizing self-care activities like gentle exercises or practicing mindfulness meditation;
  • Being open to learning about new coping mechanisms from your counselor as they may be useful tools for managing your everyday life better.

The only thing scarier than going to a treatment center is realizing you never want to leave.

Treatment Centers

Individualized care centers are available for EDS patients and their families. These centers provide personalized treatment plans to cope with symptoms, improve daily function, and enhance the quality of life. They also focus on educating patients about EDS. In addition, patients are taught self-management techniques to regain autonomy and control over their lives.

Moreover, these centers offer specialized therapies like cognitive-behavioral and physical therapy and coordinate with other healthcare professionals to promote a multidisciplinary approach. Patients can access state-of-the-art equipment, participate in research studies on the condition, and avail themselves of social support.

A vital component of these care centers is the compassionate environment that fosters patient trust, comfort, and emotional well-being. This allows open communication between patient and provider leading to a better understanding of the condition.

It is reported that 71% of EDS patients have lost or quit their jobs due to the condition (The Ehlers-Danlos Society).

The road may be bumpy for EDS patients and families, but with support, they can bounce back stronger than ever before.


After examining these 23 signs, you likely grew up with Ehlers-Danlos Syndrome. These symptoms may have been a regular part of your life and impacted your daily routine. However, it is important to note that EDS can manifest differently, and not all cases are the same.

It is recommended to consult with a medical professional if you suspect that you have EDS. They can evaluate your symptoms, diagnose properly, and suggest treatments or therapies to manage the condition.

Despite challenges faced in day-to-day activities, individuals with EDS have demonstrated resilience, strength and tenacity. Therefore, raising awareness about this condition is important to better understand and support those affected by it.

According to the Ehlers-Danlos Society, approximately 1 in 5,000 people worldwide are diagnosed with EDS.

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