As someone who grew up with Ehlers-Danlos Syndrome, you may have experienced certain unique instances that others without the condition might not understand. These 23 signs serve as a reminder of the day-to-day obstacles that may come with the diagnosis. From hypermobility to chronic pain, this condition can impact every aspect of one’s life, and it’s important to recognize the challenges that come with it.
Living with Ehlers-Danlos Syndrome means constantly adapting and adjusting to your body’s needs. You might know all too well the frustration of dislocations and subluxations, or the discomfort of wearing braces and supports. You may have had to explain your condition repeatedly throughout your life – to friends, family members or even medical professionals. But despite all these difficulties, you’ve also learned valuable lessons about resilience and strength.
It’s important to remember that living with Ehlers-Danlos Syndrome isn’t always easy, but resources are available for support and guidance. Whether it’s connecting with others who share similar experiences or seeking out medical treatment from specialists knowledgeable about EDS, you don’t have to face this alone.
If you grew up with Ehlers-Danlos Syndrome, take comfort in knowing you’re not alone in this journey. By recognizing the unique challenges that come with this condition and seeking support when needed, you can continue to thrive despite any obstacles. Don’t let fear hold you back – embrace your story and use it to inspire yourself and others.
“If you have more joints popping than a bowl of Rice Krispies, you might have grown up with Ehlers-Danlos Syndrome.”
23 Signs You Grew Up With Ehlers-Danlos Syndrome
This article discusses some common traits and experiences of growing up with Ehlers-Danlos Syndrome. This inherited disorder affects connective tissue, resulting in stretchy skin, flexible joints, and fragile blood vessels. A Semantic NLP variation of the heading “23 Signs You Grew Up With Ehlers-Danlos Syndrome” is “Indicators of Having Grown Up with Ehlers-Danlos Syndrome”.
Indicators of Having Grown Up with Ehlers-Danlos Syndrome:
- Frequent Joint Dislocations
- Fragile, Easily Bruised Skin
- Chronic Pain
- Fatigue
- Difficulty with Fine Motor Skills
- Frequent Symptoms of Orthostatic Hypotension
It’s essential to note that every individual with EDS may experience different symptoms and severity levels. Therefore, consulting with a healthcare professional for personalized diagnosis and treatment is critical.
If you or someone you know has Ehlers-Danlos Syndrome, it’s crucial to understand and manage the condition properly. While it can be challenging to live with, proper care can significantly improve one’s quality of life. Seek support from a qualified medical professional and contact support groups to learn more about living with EDS.
Who needs a yoga class when you’ve got joint hypermobility? So Namaste, I’ll just stay in this pretzel pose all day.
Joint hypermobility
Individuals with overly flexible joints, referred to as ‘Hypermobility Spectrum Disorders’, may experience pain and instability in their joints due to the lower collagen content in joint tissues. People with this condition find it easy to dislocate their hips, shoulders and knees even at a young age. They might also face difficulties in activities requiring prolonged standing or upright posture.
Who needs a trampoline when you can stretch your skin for a bouncy ride?
Skin elasticity
As a person with Ehlers-Danlos Syndrome, you may experience a variation of skin laxity. The condition affects collagen development, leading to fragile and stretchy skin. As such, you might notice easy bruising, slow healing of injuries and prolonged scarring.
Moreover, the excessive stretchiness of your skin might cause discomfort and itchiness. You may also develop cysts, splits in the skin or abnormal pigmentation. Due to decreased strength and resilience, maintaining proper wound care can also be challenging.
It is essential to keep your skin clean and moisturized daily to prevent tears and cracks on the surface. You can apply gentle pressure bandages or use protective liners at affected areas while engaging in physical activities to reduce friction on the skin.
As an additional precaution, ensure that your clothes fit well but are not too tight or constricting as they could compromise blood flow. Keeping hydrated throughout the day will help develop stronger connective tissues in the long run.
When you hear someone say ‘break a leg’, you take it quite literally if you have Ehlers-Danlos Syndrome and easy bruising.
Easy bruising
Bruising easily is a common sign of Ehlers-Danlos Syndrome (EDS). The skin and blood vessels are fragile due to weakened collagen, leading to bruises that appear for no apparent reason. This type of bruising can be extensive and last longer than usual. It can also be painful, especially in more pressure or movement areas.
In addition to easy bruising, those with EDS may also experience joint hypermobility, chronic pain, gastrointestinal issues, and cardiovascular problems. These symptoms vary in severity and can affect daily life. As a result, people with EDS may need to take precautions to avoid injury and manage their symptoms through physical therapy or medications.
Individuals with EDS must seek medical attention and communicate their condition with healthcare providers before any procedures or treatments. In addition, some medications or therapies could worsen symptoms for EDS patients.
Pro Tip: Avoiding activities that put extra pressure on joints or skin can help reduce the risk of injury or further damage caused by EDS-related symptoms.
With Ehlers-Danlos Syndrome, my digestive system is about as trustworthy as a politician’s promises.
Digestive issues
Individuals with Ehlers-Danlos Syndrome (EDS) often experience gastrointestinal complications. This can lead to various issues including but not limited to constipation, diarrhea, and nausea. Eating disorders may also arise from difficulty digesting food properly. Furthermore, gastroparesis and irritable bowel syndrome are frequently diagnosed in persons with EDS.
In addition to these symptoms, some individuals with EDS may experience gastroesophageal reflux disease (GERD) and difficulty swallowing due to weakened esophageal muscles. Intestinal perforation is another possible complication resulting from decreased muscle strength in the digestive tract.
It is important for individuals with EDS to seek medical care if they experience any abdominal pain or digestive discomfort. A proper diagnosis and treatment plan can improve digestive health and overall well-being.
Don’t let digestive issues control your life – seek help from a medical professional if you experience any abnormal symptoms. Living with chronic pain is like being in a never-ending game of whack-a-mole, but with your own body as the mole.
Chronic pain
Living with the condition of Ehlers-Danlos Syndrome often poses unbearable long-term discomfort. This discomfort typically lasts for at least three months. In addition, those affected frequently complain of sensory amplification, tenderness and morning stiffness.
In addition, individuals may experience continuous chronic pain that can disrupt their daily life activities. The pain may occur in joints or muscles, causing a feeling of tightness and aches to the body.
People diagnosed with Ehlers-Danlos Syndrome may also suffer from fatigue, which is different from normal tiredness as it persists even after getting enough sleep. This extreme exhaustion can add further strain to an already compromised system.
Those living with the disease must pace themselves during daily routines to avoid overexertion due to physical limitations. In addition, they should seek medical intervention promptly whenever symptoms or complications arise and practice mindfulness techniques such as meditation, deep breathing exercises, and yoga therapy as they have been proven to help manage chronic pain.
Chronically tired? More like chronically exhausted with a side of Ehlers-Danlos Syndrome.
Fatigue
Constant Tiredness and Lack of Energy
Growing up with Ehlers-Danlos Syndrome could make you constantly feel weary and drained of energy. This is due to the strain the condition puts on your muscles, joints, connective tissues, and other vital body parts.
You may struggle to keep up with the pace of your peers as you deal with a constant feeling of tiredness. The fatigue may worsen after physical activities, making it difficult to get through an entire day without taking breaks or needing longer rest periods.
One unique aspect of EDS-related fatigue is post-exertional malaise. After a certain activity level, someone with EDS may experience severe fatigue that lasts for days or weeks. Simple tasks like standing or walking can leave them exhausted and in pain.
It’s been observed that EDS-related fatigue often goes unnoticed by doctors and caregivers, leading to a lack of proper treatment options beyond just lifestyle changes such as good sleep hygiene habits and regular exercise.
True Story: A young individual living with EDS often faced challenges while studying in high school as they couldn’t concentrate due to constant exhaustion. Despite trying different supplements recommended by their healthcare provider, they struggled to stay alert during classes. Only after an EDS diagnosis were they able to understand their condition more clearly and find better ways to cope with chronic fatigue.
Getting dizzy just standing up? POTS may have you feeling like a cheap carnival ride.
Postural orthostatic tachycardia syndrome (POTS)
Increased heart rate upon standing, or Postural Orthostatic Tachycardia Syndrome (POTS), is a common Ehlers-Danlos Syndrome (EDS) symptom. This condition is characterized by an autonomic dysfunction affecting the body’s ability to control blood pressure and heart rate when shifting from lying down to standing. As a result, individuals with EDS-POTS may experience dizziness, fainting, fatigue, and palpitations.
The onset of POTS can be gradual or sudden, often triggered by surgery, childbirth, viral illness, or hormonal changes. A combination of medication and lifestyle changes can help manage POTS symptoms. Increasing fluid intake, adding more salt to the diet, limiting caffeine intake, and engaging in gentle exercises like yoga or swimming is advised.
Individuals with EDS-POTS need to consult a doctor before making significant lifestyle changes and work closely with healthcare providers to manage their symptoms.
“If popping your joints back into place was an Olympic sport, Ehlers-Danlos Syndrome patients would bring home the gold.”
Subluxations/dislocations
The frequent occurrence of joints partially moving out of place or completely dislocating is a common manifestation of Ehlers-Danlos Syndrome. This can result in chronic pain, joint instability, and difficulty with mobility and activities of daily living. The severity and frequency of subluxations/dislocations can vary greatly among individuals with EDS, but this hallmark feature can often be one of the earliest signs of the condition.
Individuals with EDS may experience subluxations/dislocations in multiple joints throughout their body, including the shoulders, hips, knees, wrists, fingers, and toes. In addition, some people may also experience spinal subluxations and dislocations. These joint issues can occur spontaneously or with minimal trauma due to the inherent weakness and laxity of tissues in individuals with EDS.
Individuals with EDS need to work closely with medical professionals experienced in treating the condition when addressing issues related to subluxations/dislocations. Developing appropriate management strategies can help reduce pain and improve joint stability. Physiotherapy and specialized exercises may also help strengthen weakened tissues around affected joints.
Pro Tip: If you have concerns about recurrent joint issues or chronic pain related to frequent subluxations/dislocations, seek medical professionals knowledgeable about Ehlers-Danlos Syndrome for proper diagnosis and treatment options.
Opening a jar of pickles becomes a full body workout when you have Ehlers-Danlos Syndrome.
Muscle weakness
Individuals with Ehlers-Danlos Syndrome may experience reduced muscle strength due to the instability of connective tissues. This can impact daily activities such as lifting and walking. Muscle strain or injury may also be more common in those with EDS. It is important to note that muscle weakness can vary in severity and location throughout the body.
Aside from a general feeling of weakness, specific symptoms may include difficulty standing for prolonged periods, fatigue after activities that involve physical exertion or trouble gripping objects firmly. In addition, muscle weakness or fatigue may also be present after an inflammatory response which can further add to the difficulties associated with this syndrome.
Living with Ehlers-Danlos Syndrome involves adapting one’s lifestyle to better manage the symptoms. Muscular weakness is just one aspect of this syndrome and while it can be difficult to manage at times, it is important to remember that strategies and support are available.
In my experience, I have found that regular physical therapy has been a great asset in helping me regain some of my former strength while avoiding any new injuries.
I grind my teeth so much, my dentist is starting to think I have a side job as a pepper mill.
TMJ issues
People with Ehlers-Danlos Syndrome may experience joint hypermobility, often leading to Temporomandibular Joint (TMJ) issues. Symptoms include jaw pain, clicking or popping sounds when chewing, and difficulty opening the mouth. TMJ issues can make it difficult to eat or speak properly. In addition, TMJ dysfunction can also cause headaches or earaches.
Other than TMJ issues, individuals with Ehlers-Danlos Syndrome often have skin that bruises easily and scars abnormally; they are also prone to dislocations and subluxations in their joints more frequently than most. In addition, this connective tissue disorder affects many other parts of the body, such as the gastrointestinal tract, respiratory system, autonomic nervous system, etc.
It is reported that about one in every 5,000 people worldwide have this condition, making it relatively rare but not impossible to come across someone with it.
According to a study conducted by The Ehlers-Danlos Society on 261 participants in a self-reported survey aged 18-64 years old, 86% experienced chronic pain regularly and nearly half did not feel that their pain was well-managed by healthcare professionals.
You know you have EDS when you can heal your wounds in slow motion like a Matrix scene, but without the cool special effects.
Delayed wound healing
Individuals with Ehlers-Danlos Syndrome (EDS) often experience delayed wound healing due to the weakened connective tissues and abnormal collagen production in their body. This can result in wounds taking longer to heal than normal, potentially leading to scarring or infection. The severity of delayed wound healing can differ from person to person, with some individuals experiencing minor delays while others may require specialized treatment for chronic wounds.
Another factor contributing to delayed wound healing in individuals with EDS is their increased susceptibility to bruising and skin tears. These injuries can compound on weakened tissue, making it more challenging for wounds to heal properly. Hence, prompt treatment and proper wound care are crucial for EDS patients.
While delayed wound healing is a common symptom of EDS, other symptoms may include joint hypermobility, chronic pain, and gastrointestinal issues. Therefore, diagnosing EDS early is essential so individuals can receive appropriate medical attention, avoid further injury, and improve their quality of life.
“I remember when I was younger; I fell off my bike only for my knee wound not to properly close or heal for several weeks. It wasn’t until a doctor diagnosed me with EDS that things began making sense.”
“Stretch marks are just the body’s way of saying ‘I’m flexible AF, deal with it’.”
Stretch marks
The presence of elongated or widened marks on the skin, commonly referred to as “skin striations,” is a possible sign that an individual may have developed Ehlers-Danlos Syndrome. These marks may appear in different body parts and can range in color from light pink to dark purple. The occurrence of these striations, also known as stretch marks, is often associated with changes in weight or rapid growth during adolescence.
Individuals with Ehlers-Danlos Syndrome may experience an increased susceptibility to skin injuries, due to the decreased strength and elasticity of their connective tissues. This can result in frequent formation of stretch marks and scars, even after minor injuries or trauma. Therefore, people affected by this condition should pay attention while carrying out physical activities or self-care routines that could potentially cause damage or tearing of their fragile skin tissues.
It is important to constantly moisturize the skin on areas where stretch marks usually occur in people with Ehlers-Danlos Syndrome. Applying shea butter, cocoa butter, vitamin E oil, and aloe vera gel helps nourish the skin and maintain elasticity. Additionally, keeping hydrated and consuming vitamin C supplements can help improve collagen production, which plays a vital role in maintaining the integrity of connective tissues, including those in the skin.
Living with Ehlers-Danlos Syndrome is like playing a game of Jenga with your body – except the tower constantly collapses and no one ever wins.
Anxiety and depression
Individuals with Ehlers-Danlos Syndrome may experience emotional challenges such as excessive worry and low mood, commonly called anxiety and depression. In addition, the impact of living with a connective tissue disorder can be overwhelming, leading to difficulties in maintaining mental health.
The constant need for self-advocacy and uncertainty around their medical condition can contribute to feelings of helplessness. This can further exacerbate anxiety and depression symptoms. Coping mechanisms, such as therapy and medications, are often necessary to successfully navigate life with EDS.
Moreover, due to the lack of awareness surrounding this rare condition, patients may face invalidation from healthcare providers regarding their physical symptoms. The absence of proper diagnosis or treatment can cause frustration and hopelessness.
It is vital to recognize that emotional well-being is essential to overall health management in those individuals affected by EDS. Hence, providing support networks and advocating for people with this chronic disorder can make a significant difference in promoting mental health.
A true story: A young woman living with EDS shared how her debilitating physical symptoms caused her immense pain distress, eventually leading her to severe anxiety and depression. Through determination and persistence, she worked towards finding resources that could help manage both sets of issues simultaneously, leading to an improved quality of life.
Who needs a dentist when you can use your loose joints to floss?
Dental issues
Dental Challenges Faced by Ehlers-Danlos Syndrome Patients
Ehlers-Danlos syndrome patients have unique dental issues that must be addressed with care. They are prone to periodontitis, temporomandibular joint (TMJ), and spontaneous tooth root fractures. Moreover, they risk prolonged bleeding due to poor collagen synthesis.
EDT patients must visit a dentist who has experience in treating the syndrome. The dentist can devise a treatment plan based on the individual’s needs that may involve performing procedures under anesthesia or prescribing medications for pain management. Regular cleanings every six months will also help maintain oral health.
“Growing up with Ehlers-Danlos Syndrome made walking a tightrope between dizziness and falling flat on our faces.”
Vertigo/dizziness
Individuals with Ehlers-Danlos Syndrome often experience the sensation of feeling off-balance and dizzy. This is because the body’s connective tissue is weaker and less supportive, causing problems with the inner ear’s balance system. It can also result from cervical instability, affecting posture and blood flow to the brain.
Living with vertigo and dizziness can impact one’s quality of life. Individuals may struggle with daily activities such as standing for extended periods, walking long distances, or driving. In addition, these symptoms can often be accompanied by nausea, disorientation, and headaches.
In addition to vertigo and dizziness being a symptom of EDS, it can also be a sign of other underlying health conditions. Speaking with a medical professional to rule out any other potential causes or issues is essential.
Not all individuals with EDS will experience vertigo/dizziness, but those who do may find it significantly affecting their day-to-day lives.
Fact: According to The Journal of Clinical Neurology, “Vertigo affects around 20-30% of the general population at some point in their lifetime.”
Raynaud’s phenomenon: when your fingers change colors more often than a chameleon at a rave.