How do you know if you have Ehlers-Danlos Syndrome?

Although Ehlers-Danlos syndrome (EDS) is a genetic illness, it may take several years (or even decades) before you are diagnosed with the condition. During youth, you may be more flexible or prone to sprains and injuries than the other children in your class. It is possible that doctors would believe your discomfort is simply a result of “growing pains.” If you have EDS, doctors may not diagnose you until you have progressed several of your symptoms.

Although the hypermobile subtype of Ehlers-Danlos syndrome is the most prevalent, there are 13 other subtypes. The symptoms you face will vary depending on your subtype, but the majority of persons with EDS have excessively flexible joints, frequent partial or complete joint dislocations while doing ordinary tasks, elastic or delicate skin, easy bruising, and persistent discomfort. Because EDS is a complex disorder that overlaps with many other chronic conditions, it is not usual to take more than ten years to diagnose the disease properly.

You might have believed you were exceptionally adaptable as a child. Perhaps you achieved success as a dancer or gymnast due to your innate ability to execute a split without exerting any effort or because you were able to bend your body in a way that made your classmates envious. However, while this increased flexibility might be beneficial in your younger years, it can also result in persistent musculoskeletal discomfort around your joints and saggy skin as you become older.

Hypermobile EDS is the Least Severe Type

In this case, the disease is a hereditary issue, although the exact source of this condition is unknown. If you have hypermobile EDS, you may notice extraordinary joint flexibility as well as somewhat flexible skin as early symptoms. This is because a deficiency causes EDS in the kind of collagen that your body manufactures.

Following are the most common symptoms of hypermobile EDS:

·        The pelvis, hips, shoulders, arms, elbows, knees, fingers, and toes are all examples of hypermobile joints.

·        Skin that is prone to stretching

·        Proclivity to swell and bruise easily

·        Joint dislocations

·        Musculoskeletal discomfort that persists over an extended time

·        TMJ (temporomandibular joint) discomfort or tightness in your jaws

When it comes to children and adolescents, hypermobile EDS is prevalent, and it can cause a variety of issues in maturity, including:

•        Osteoarthritis with early-onset

•        Osteoporosis

•        Cardiovascular issues are a concern.

•        Problems with the gastrointestinal tract

•        Issues with the autonomic nervous system

How you figure out whether you have EDS:

You must have at least five more symptoms from a list of possible issues, in addition to hyperflexible joints; these additional symptoms include:

•        Skin that is soft and silky

•        Exceptionally supple skin

•        Papules on the bottom of the feet

•        Hernias in the abdomen

•        Prolapse of the uterus, pelvis, or rectal organs

•        Crowded teeth

•        Mitral valve prolapse is a medical condition.

•        Skin scars or stretch marks that are unexplained

Additional musculoskeletal issues that may aid in the determination of an EDS diagnosis include the following:

•        Joint dislocations

•        Pain in limbs daily for at least three months

•        Severe, widespread chronic Pain

Because hypermobile EDS is hereditary, you likely have the disorder if you have another family member who has the illness and satisfies the other criteria.

It’s possible that after receiving your diagnosis, you’ll look back and discover that many of your childhood “quirks” were early symptoms of the disease.

Signs that help you to know that you have Ehlers-Danlos Syndrome

1.      Having Extra Flexibility

Having a flexible body during gym class may have been one of the first signs that you had EDS if you were the kid who could always pass the exam. One of the most prevalent signs of the illness is being more flexible than the average person – sometimes significantly more flexible.

2.      Perceiving That You Were Double-Jointed

Connective tissue is responsible for holding all of your joints together. Given that EDS can influence the quality and quantity of connective tissue in your body, many people with EDS are in danger of developing complete or partial joint involvement. When you appear to be double-jointed, you are most likely suffering from a subluxation, a type of partial joint dislocation that is quite painful.

3.      Experiencing Regular Joint Dislocations

Apart from making you more susceptible to partially displaced joints, EDS might also make you more susceptible to entirely displaced joints. Dislocations of joints, such as the elbows, shoulders, and jaw, are common among persons going about their daily lives, such as picking up a shopping basket at the grocery store. Joint dislocations arise due to variations in the connective tissues that surround the joints in your body.

4.      Constantly Putting on Support Braces

The natural tendency to use braces or splints to help hold your joints in place when they are prone to popping in and out or when you are experiencing pain and weakness is understandable. Of course, when you’re a small child, you may be one of the few children who require additional assistance to play on the playground properly.

5.      Bruising is Relatively Easy to Get.

The connective protein collagen, which is affected by EDS-related gene alterations, is responsible for the smoothness and suppleness of your skin in significant part. Many patients with Ehlers-Danlos syndrome have delicate skin prone to bruising and bleeding readily, and their wounds may heal more slowly than average.

6.      Using Pencils in a Different Way

The way your joints function may differ from that of your regular counterparts if you have EDS. You may need to modify your activities to accommodate your physical limitations. Take, for example, the act of holding a pencil. If you’re prone to dislocations and suffer from chronic discomfort in your hands, learning the exact grip as your peers in elementary school might be an unpleasant experience for you.

7.      Requiring More Time to Avoid Injuries

If you have EDS and experience symptoms such as painful joint dislocations, you may require additional time to accomplish routine tasks that your peers can complete with ease. To avoid dislocations or Pain, you may have found yourself doing things differently than your peers, whether it’s putting your backpack away more slowly than your peers or strolling to the lunchroom with your pals.

8.      Being Told that You are Experiencing “Growing Pains.”

Chronic Pain in children is frequently misdiagnosed as “growing pains,” which may be highly frustrating for parents. In the case of EDS, however, the discomfort is genuine and not just “only” a side effect of growing up, as some people believe. Joint pain is the most common complaint people have.

9.      Hearing Jokes about Your Symptoms

It may have been simple to dismiss your ability to do a contortionist “trick” as a “joke” or something to be laughed at when you were younger. In actuality, however, flexibility or joint popping was a sign of early-onset EDS. It’s one of the reasons why some people have trouble receiving an EDS diagnosis – it might take some time to piece together the evidence that your symptoms are caused by Ehlers-Danlos syndrome.

10.  Being Teased for being ‘Clumsy’

When you were a youngster, getting injured often, especially while participating in normal kid activities like racing around the playground, may have earned you a reputation as someone who was unsteady on their feet. However, those dislocations or sprains, spontaneous bruising, and slow-healing wounds all pointed to EDS as the cause of the symptoms.

11.  Adapting Activities to Reduce or Eliminate Pain

Ehlers-Danlos syndrome can be an “invisible sickness” or “invisible handicap” in that it is not immediately apparent that you are suffering from symptoms such as joint dislocations and subluxations or persistent Pain in your daily life. While growing up, it’s possible that you found yourself compensating by figuring out how to modify activities so that you didn’t get harmed.

12.  Having a Greater Propensity to Get Sick

Because connective tissue may be found throughout your body, the changes produced by EDS can cause a wide range of symptoms that are not limited to your joints. In addition to gastrointestinal difficulties, people diagnosed with EDS may also suffer from migraines, postural orthostatic tachycardia syndrome (POTS), chronic discomfort, tiredness, and visual problems, among other symptoms.

13.  Suffering from Chronic Pain at a Young Age

It is common for people to be subjected to the misconception that chronic Pain or chronic disease exclusively affects the elderly – think of the dreaded statement, “You’re too young to be ill.” In the event, if you were interrogated about turning up to the doctor’s office with Pain that was generally associated with individuals seven decades older than you, it is possible that you were suffering from EDS.

14.  Running with a Different Gait

Whether you like it or not, running in gym class is a staple of school life. There are numerous joints involved in this high-impact workout, including your hips, thighs, and ankles. As a result of how EDS affects your joints, you or others may have observed that your running stride differs from other children.

15.  Wearing a Particular Clothing

In addition to persistent discomfort, you may notice that your skin has become delicate or sensitive. You may have been selective about the clothing you wore, reaching for only the softest, most comfortable garments to prevent pain and suffering, similar to other children who have invisible diseases, impairments, or sensory sensitivities, as well as other children.

16.  Comparing Your Joints to the Joints of Other Children

You may have reached a moment where you became aware that you (and your limbs) were functioning in a somewhat different manner than your peers. The most natural thing for children to do is to compare. Is it possible for other children to extend their fingers back? Every time one of my students picks up their book bag, does it cause their shoulder to dislocate as well? If you have EDS but were unaware of it, you might be able to relate.

What is the procedure for diagnosing Ehlers-Danlos Syndrome?

The following stages are generally used in the process of diagnosing Ehlers-Danlos syndrome:

·        Physical examination: Your doctor would examine your joints and evaluate the range of motion they display. A greater-than-normal range of motion — for example, the ability to bend your forearms below the elbow with your hands facing up in the opposite direction of the typical way – may suggest EDS in some cases. Furthermore, your doctor will evaluate the suppleness and resistance of your skin to cuts, bruising, and other forms of damage.

·        Medical history from your family: Because EDS has a significant hereditary component, your doctor will be particularly concerned about whether your parents or other family members have been diagnosed with the condition.

·        Echocardiogram: When you have vascular EDS, your symptoms may not be immediately apparent. An echocardiogram can help you determine if you have this condition. If your doctor has reason to believe that you have problems with your heart or arteries, they may recommend that you get an echocardiogram. In medicine, echocardiography is an imaging technique for the circulatory system that uses sound waves to produce heart images for medical examination.

·        Other imaging tests: In addition to X-rays, CT scans, and magnetic resonance imaging (MRI) scans, various imaging procedures can be used to provide detailed pictures of joints and other structures that EDS has harmed.

Additionally, your doctor will likely send you to a genetics specialist as well. They will do molecular testing to more accurately determine the type of EDS or other connective tissue condition you are suffering from due to your symptoms.

Living with EDS

The objective of treatment for hypermobile EDS is to enhance your joint stability and give long-term pain relief as naturally as possible while keeping your joints as healthy as possible. It may recommend physical therapy to strengthen your muscles, braces to stabilize your joints, and perhaps treatments to improve your discomfort and the stability of your joints, depending on your particular requirements. This may also keep an eye out for indications of arthritis and reduced bone density, among other things.

Chronic musculoskeletal discomfort and joint instability can have a detrimental influence on your everyday activities and impact your overall health and well-being. Please don’t hesitate to seek expert diagnosis and treatment for hypermobile EDS if you suspect you or a family member will be suffering from this hereditary illness. This will allow you to avoid future issues and enhance the quality of your life right now.

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