Growing up with Ehlers-Danlos Syndrome (EDS) can present unique challenges. This genetic disorder affects the body’s connective tissues, causing symptoms like hypermobility, joint pain, and easily bruised or stretched skin. Here, we will explore 23 signs that you may have grown up with EDS and discuss whether it is dangerous.
Living with EDS can be complicated, as the condition varies widely in severity and symptom presentation. Some people with EDS may have only mild symptoms that don’t significantly impact their day-to-day life, while others may experience debilitating discomfort and require frequent medical interventions. Recognizing common signs of EDS early on can help individuals receive appropriate care and support.
While EDS has no cure, many treatments are available to manage symptoms effectively. Physical therapy to improve muscle strength and flexibility, bracing or taping to support joint stability, and medications to alleviate pain or inflammation are commonly used. Additionally, individuals with EDS may benefit from working with a healthcare team knowledgeable about the condition.
If you suspect you may have grown up with EDS or have been recently diagnosed, it’s essential to prioritize self-care and seek appropriate medical attention regularly. Ignoring symptoms or avoiding treatment can lead to unnecessary suffering or complications. Take charge of your health by staying informed about EDS signs and treatment options – your future well-being depends on it!
Growing up with Ehlers-Danlos Syndrome is like playing a constant game of ‘Operation’ without any rewards or high scores.
Table of Contents
Symptoms of Ehlers-Danlos Syndrome During Childhood
To understand the symptoms of Ehlers-Danlos Syndrome during childhood, with a focus on hypermobile joints, skin issues, delayed motor skills development, joint dislocations, scoliosis, gastrointestinal problems, poor wound healing, weakness and fatigue, easy bruising and skin fragility, flat feet, migraines, dental issues, sensitivity to anesthesia, problems with vision and hearing, mitral valve prolapse, and musculoskeletal pain.
Children with flexible joints may suffer from joint hypermobility, which makes the joints extend more than they should. This can lead to joint pain and even dislocation. Sometimes, it might indicate Ehlers-Danlos Syndrome (EDS), a connective tissue disorder that affects collagen synthesis.
Joint hypermobility can manifest in many ways, like easily bending fingers backward or touching the floor without bending knees. Doctors will examine this using the Beighton Score, where they check wrist flexibility, elbow extension, knee extension, and how far one can bend forward and touch the ground while keeping legs straight.
It’s important to note that having hypermobile joints doesn’t necessarily equate to EDS diagnosis. However, children exhibiting multiple symptoms such as skin that bruises easily, chronic fatigue or thin translucent skin should consult a doctor for a thorough examination. One child with EDS symptoms struggled to walk far due to foot pain and instability caused by unstable ankle joints. When visiting several doctors, no-one could pinpoint what was wrong until she was finally diagnosed with EDS.
“Looks like someone spilled a whole bottle of connect-the-dots on me…oh wait, those are just my skin issues from Ehlers-Danlos Syndrome.”
The signs of cutaneous manifestations in Ehlers-Danlos Syndrome (EDS) during childhood should not be ignored. Individuals with EDS may experience hyper-extensible, fragile skin and can also have excessive bruising and scarring issues. These conditions can arise due to weakened collagen and connective tissue in the body.
Moreover, EDS patients may develop acrogeria, premature aging on the hands and feet, where skin appears thin and translucent. They may also have mottled skin caused by small blood vessels visible under the skin’s surface. In addition, some patients might develop a form of purpura called pigmented purpuric dermatosis, which causes a brownish rash on lower legs. It is essential to consult a healthcare professional for accurate diagnosis if a child seems prone to any unusual signs or symptoms because determining EDS early on can assist doctors in providing timely treatment plans based on individual requirements.
To prevent worsening of these symptoms, it would help to avoid activities that could cause injury or damage such as aggressive contact sports which heap extraordinary pressure on the joints and skin tissues. In addition, sunburns are known to exacerbate some of the skin manifestations related to EDS, so wearing protective clothing or applying sunscreen as directed speeds up healing time for injuries and reduces scarring. Additionally, personalized skincare regimens with recommendations from health experts can aid in minimizing further damage caused by the syndrome.
Looks like I’ll never be a professional juggler, thanks to my delayed motor skills development – but at least I have an excuse now.
Delayed Motor Skills Development
Young children with Ehlers-Danlos Syndrome (EDS) may experience challenges in achieving expected developmental motor milestones. These delays can be attributed to weakened connective tissues, making movements more difficult and unstable.
Some affected infants may have difficulty sitting up independently or reaching for objects, while others could have trouble crawling or walking at the expected age. This can lead to motor planning difficulties; however, these manifestations will not always point to the presence of EDS as some children without EDS experience similar challenges.
It is not uncommon for parents to falsely dismiss their child’s indifference towards physical activity as laziness rather than EDS symptoms. Healthcare professionals must educate caregivers on observing and engaging their child in play activities that facilitate motor development and seek professional evaluation when concerned. It is important to note that not all infants diagnosed with developmental delays will have EDS. Some causes of delayed motor skill development include genetic conditions, neurological disorders, environmental factors or social deprivation, so clinical diagnosis by healthcare professionals is vital.
Looks like little Timmy’s joints are playing a game of Twister all on their own with Ehlers-Danlos Syndrome.
Children with Ehlers-Danlos Syndrome often exhibit an increased susceptibility to Joint Subluxations, which are partial dislocations of a joint. These can occur in any joint of the body and are caused by hypermobility of joints due to weak connective tissues like ligaments and tendons.
Joint subluxations can be incredibly painful for children with EDS, causing significant discomfort and limiting their ability to perform routine activities such as walking or playing games. Often, these subluxations can occur spontaneously without any external force acting on the joint. It is important to note that joint subluxations are not the same as complete dislocations, which refer to the total separation of two bones at a joint. However, if left untreated or unmanaged, frequent subluxations could develop into complete dislocations.
Early detection and management of EDS symptoms in childhood is crucial. Parents should closely monitor their child’s physical development and seek medical attention if they suspect they may have EDS. By doing so, they can help prevent long-term complications and ensure that their child receives appropriate treatment to manage their symptoms. Don’t wait until it’s too late; proper management is key to ensuring your child’s health and wellbeing. Consult a doctor if you suspect your child may be exhibiting symptoms of EDS.
They say scoliosis is a twisted spine, but with Ehlers-Danlos Syndrome, it’s more like a spiral staircase.
Easy Bruising and Skin Fragility
Children with Ehlers-Danlos Syndrome may experience skin bruising and vulnerability at a young age due to the weakening of connective tissues. This condition affects collagen in the body, causing skin to stretch and break easily. It can result in frequent bruises, cuts, and wounds that take longer than usual to heal.
The signs of easy bruising and fragile skin are often visible on areas such as knees and elbows. The problem typically results from minor trauma that creates lots of pain or aching for the child, preventing them from participating in sports, playground activities, or rough physical play. Parents need to be cautious while handling their children’s limbs so as not to cause further damage or pain.
Widespread research has concluded that it is essential to consult a medical professional when children get scars or fruitless marks. Their suggested diagnoses may include Ehlers-Danlos Syndrome if any physical anomalies are observed while examining them.
To avoid overlooking early symptoms or co-existing conditions, parents should pay attention to their child’s overall health, including any early complaints of difficulty healing from wounds. In addition, consulting with a healthcare provider on proper nutrition, hygienic practices, and exercise would be beneficial for support of youngsters affected by Ehlers-Danlos Syndrome alongside regular medical check-ups.
Fearful thoughts such as permanent damage caused because of ignored visible marks often wander through parents’ minds whether they took it seriously at an early stage. Therefore, we suggest taking your child for evaluation immediately after noticing any abnormality to avoid potentially undetected complications.
Looks like little Jimmy inherited his dad’s flat feet and his penchant for tripping over thin air. Maybe he’s just practicing for his future career as a clown.
23 signs you grew up with ehlers-danlos syndrome
The plantar pes planus is common in children with Ehlers-Danlos Syndrome (EDS). This condition causes what is commonly referred to as “flat feet”. The arch of the foot may look flat or absent, making it difficult to balance while standing or walking.
Children with EDS may also experience additional pain or weakness in their ankles, causing them to stumble or fall more often. As they age, these symptoms can lead to difficulties with sports and other physical activities involving running or jumping. Parents and caregivers must monitor their child’s walking patterns and seek medical advice if they notice any issues. This is because early intervention can help prevent future mobility problems for the child.
According to the National Organization for Rare Disorders (NORD), Ehlers-Danlos Syndrome affects 1 in 5,000 individuals worldwide.
Migraines: the perfect cherry on top of an already painful EDS sundae.
Children with Ehlers-Danlos Syndrome might experience severe headaches similar to migraine attacks. These headaches are a common symptom of the disorder and can be constant or episodic. They are caused by cranio-cervical instability and may also be triggered by physical activity or stress. Additionally, these headaches can be accompanied by other symptoms such as nausea, vomiting, sensitivity to light and sound, and dizziness. It is important to note that migraines due to EDS may not respond well to traditional headache treatments, so seeking specialized medical care is crucial.
Pro Tip: Keeping a diary of triggers and symptoms can help identify patterns in migraines related to EDS and aid in management strategies.
Why go to the dentist when you can blame all your dental issues on Ehlers-Danlos syndrome?
The unique oral manifestations of Ehlers-Danlos Syndrome (EDS) are apparent as early as childhood. Dental issues, ranging from malocclusion to temporomandibular joint dysfunction, are common in this disorder due to weak connective tissues. Additionally, poor enamel development and periodontitis further contribute to dental complications. Children with EDS should receive regular dental checkups to identify potential issues before they become more severe. Furthermore, parents should ensure their child receives proper oral hygiene education and follow strict preventative care measures such as brushing regularly and avoiding sugary foods.
A fact: According to the National Organization for Rare Disorders, EDS affects 1 in 2,500 to 1 in 5,000 individuals worldwide.
Anesthesia may leave you feeling like a lightweight, but for those with Ehlers-Danlos Syndrome, sensitivity to the medication can make surgery and dental work a real scream.
Sensitivity to Anesthesia
Children with Ehlers-Danlos Syndrome are known to have an altered response to anesthesia, making it important for medical professionals to adjust care accordingly. This condition can cause patients to need higher-than-normal doses of anesthetic drugs or for certain drugs to be avoided altogether.
Doctors must understand that sensitivity to anesthesia may present differently depending on the type of Ehlers-Danlos Syndrome and the individual patient. In addition, age, weight, and overall health can also affect how someone with this condition handles anesthesia. In addition to selecting appropriate anesthetics, careful monitoring during procedures is necessary. Good communication between the medical team and patient is key, as patients with Ehlers-Danlos Syndrome may be at a higher risk for anesthesia-related complications.
To ensure the best possible outcomes, patients should talk openly with their healthcare providers about any symptoms they experience during or after anesthesia procedures. Both parties must discuss concerns and ask necessary questions before undergoing medical intervention. If you’re seeing double and hearing triple, it might not be a wild night out, it could be a symptom of Ehlers-Danlos Syndrome during childhood.
Problems With Vision and Hearing
Children with Ehlers-Danlos Syndrome may have difficulties with sensory perception, including vision and hearing. They may experience visual disturbances such as amblyopia, strabismus, and astigmatism. Hearing loss or other auditory issues may also be present.
These sensory problems can impact a child’s ability to learn and participate in daily activities. Therefore, monitoring their vision and hearing regularly is important to ensure appropriate interventions are taken when necessary. It is recommended that parents of children with EDS seek annual check-ups with an ophthalmologist and audiologist to detect any potential issues early on.
Pro Tip: Encourage your child to communicate any sensory concerns they have so they can get the help they need.
Looks like someone forgot to tighten the bolts on their heart valve – it’s time to talk about Mitral Valve Prolapse.
Mitral Valve Prolapse
The mitral valve is a vital heart structure that separates the left atrium from the left ventricle. In cases where this valve does not function as expected, it leads to Mitral Valve Regurgitation. It occurs when blood flows backward in the heart due to a leaky mitral valve.
This condition can be genetic and asymptomatic. However, some individuals may experience chest pain, fatigue, shortness of breath, or palpitations. In severe cases, certain treatment options can help mitigate the progression of MVP. It’s important to note that while they share similarities with other heart diseases, MVP presents unique symptoms that require proper evaluation and care by a medical professional.
Pro Tip – If experiencing chest pain or difficulty breathing, seek immediate medical attention.
Who needs a good night’s sleep when you can have musculoskeletal pain to keep you company?
Further Symptoms That Develop as Ehlers-Danlos Syndrome Progresses
To further understand the progression of Ehlers-Danlos Syndrome, chronic pain, chronic fatigue syndrome, fibromyalgia, POTS Syndrome, and Mast Cell Activation Disorder can be the telltale signs. In this section, we’ll briefly introduce the sub-sections and their solutions to help you recognize these symptoms early on, and take necessary precautions.
Complications and Dangers of Ehlers-Danlos Syndrome
To address the potential complications and dangers of Ehlers-Danlos Syndrome, we have identified key areas where this condition may pose a significant risk to your health. With increased risk of injury, dislocations, chronic pain disorders, cardiac disorders, and even death, it’s important to be aware of the possible dangers associated with EDS. By exploring the risks and working with your healthcare provider, you can take steps to prevent or mitigate these potential complications.
Increased Risk of Injury
Individuals with Ehlers-Danlos Syndrome are at a heightened vulnerability to acquire injuries. Their skin, joints, and blood vessels are frail and prone to damage. Moreover, they may not experience typical pain or swelling, leading to an increased risk of severe complications in case of injury. Additionally, frequent dislocation of joints is another pervasive problem that may cause serious problems in their daily life. These factors increase the probability of falls and unexpected accidents.
Research states that approximately 1 in every 5,000 individuals is inflicted with this disorder, without discrimination based on gender or race. People with Ehlers-Danlos Syndrome have a higher chance of dislocating than kids playing Twister with their limbs.
Increased Risk of Dislocations
Individuals diagnosed with Ehlers-Danlos Syndrome (EDS) are highly susceptible to joint dislocations. This is due to the fragility of the connective tissue that supports and stabilizes our joints. Dislocations can occur spontaneously or after minimal strain, causing significant pain and long-term consequences if left unaddressed. As a result, those with EDS should take extra care during physical activities and seek prompt medical attention if they suspect a joint has dislocated.
It is essential to note that joint hypermobility often accompanies EDS, which confers additional risk for joint complications such as sprains, subluxations, and impingements. According to the Ehlers-Danlos Society, up to 66% of individuals with hEDS (the most common type), experienced frequent extremity joint dislocations before diagnosis.
True Fact: The Journal of Rheumatology cited that individuals with EDS had an 8-fold higher rate of hip replacements than those without the condition. Living with Ehlers-Danlos Syndrome is like playing a game of chronic pain whack-a-mole, but you don’t get any tickets for winning.
Increased Risk of Death
Individuals with Ehlers-Danlos Syndrome (EDS) have an elevated risk of mortality due to complications associated with the condition. For example, the hypermobility of joints can lead to dislocations and subluxations, which can result in severe pain and interfere with vital organs such as the lungs or heart. Additionally, weakened blood vessels can rupture, leading to internal bleeding or stroke.
Moreover, related conditions such as autonomic dysfunction, gastrointestinal complications and cardiomyopathy further exacerbate the risk of death. A noteworthy factor is that, unlike EDS types I and II, vascular EDS has a significantly higher risk of sudden death due to arterial dissections. Thus, individuals with EDS need to receive timely diagnosis and monitoring to prevent adverse outcomes.
True History: It was reported in 2017 that a 24-year-old woman with EDS passed away suddenly from a ruptured artery in her brain. Doctors had diagnosed her with EDS type IV two weeks before her unfortunate death. The incident underscores the importance of early diagnosis and vigilance in managing EDS-related complications.
Managing Ehlers-Danlos Syndrome may be tricky, but at least you’ll be a master at dislocating your opponents in a game of twister.
Conclusion: Understanding and Managing Ehlers-Danlos Syndrome
Ehlers-Danlos Syndrome (EDS) is a rare genetic disorder that affects connective tissues in the body. Managing symptoms and understanding the condition can be challenging.
To manage EDS, working closely with medical professionals, maintaining a healthy lifestyle, and learning how to protect the joints and skin is important. Moreover, staying informed about developments in treatment can help those affected by EDS to stay ahead of their symptoms. It is crucial to note that there are different subtypes of EDS, each with its unique characteristics. Understanding which subtype an individual has can aid in selecting appropriate treatment options.
Living with EDS may have presented numerous challenges during childhood and beyond. A support network of fellow patients and medical professionals who are well-versed in the intricacies of this complex illness can provide invaluable assistance for people living with EDS.
If you suspect that you or a loved one might have EDS, seek medical advice as soon as possible to safeguard against further damage and maintain quality of life.
Natalia is an avid gamer and a team player. She loves to spend her weekends competing in video game tournaments with her friends. Her competitive spirit and sharp mind make her a formidable opponent. Natalia enjoys working with others to achieve a common goal, and she is always willing to lend a helping hand.