16 Signs You Grew Up With Ehlers-Danlos Syndrome

• What is Ehlers-Danlos Syndrome? • What Are Typical Symptoms of Ehlers-Danlos Syndrome?


According to board-certified geneticist Paldeep Atwal, MD, he explained that EDS is a genetic disorder that affects connective tissue. This condition, along with other connective tissue disorders, occurs when the strength and structural integrity of the connective tissue are not functioning properly.

EDS diagnosis can take more than 10 years if it’s not uncommon, because it’s a complicated condition that overlaps with many other chronic illnesses. Most people with EDS experience chronic pain and easy bruising, as well as fragile or stretchy skin. They also regularly experience full or partial joint dislocations and overly flexible joints while doing everyday activities. However, there are 13 subtypes of Ehlers-Danlos syndrome, with the hypermobile subtype being the most common.


Some of you may also find this familiar. Our Mighty community asked us if those who grew up with Ehlers Danlos syndrome, which they now recognize, share any signs. After your diagnosis, you might look back and realize that many of your childhood “quirks” were actually early signs of the illness.

Here’s what the community has shared with us:

1. Having Extra Flexibility

Dr. Atwal said that it is really a hallmark feature. People tend to be hypermobile. One of the most common symptoms of the condition is being more flexible than average, sometimes in a more flexible way. If you have EDS, it may have been one of the early indicators, especially if you were always the kid who could ace the flexibility test in gym class.


I did not know that the lack of flexibility would cause many problems for me later. It was a bad thing that I was not aware of the importance of flexibility in activities such as cheerleading, ballet, and gymnastics. As a child, I was always extremely flexible, even more so than other children my age.

In my later years, it was not acknowledged as medically noteworthy, but I was consistently adaptable. Since early childhood, I experienced gastrointestinal problems, which I now realize were my initial unfavorable indications.

When you were sitting twisted up like a pretzel with your head behind your feet, playing video games on a Saturday afternoon, Laura M. Thought that it wasn’t a normal idea at all.


The presence of Ehlers-Danlos Syndrome (EDS) can have an effect on the quantity and quality of connective tissue within your body, potentially leading to an increased susceptibility for individuals with EDS to experience complete or partial joint dislocations. The occurrence of subluxation, which refers to partial joint dislocations, is commonly associated with the sensation of being double-jointed. Connective tissue plays a crucial role in maintaining the stability of all your joints.

Jacqulyn S. – I can subluxate both shoulders as well as other joints without any discomfort or conscious effort. I used to think I was just double-jointed.

3. Experiencing Regular Joint Dislocations

Connective tissues encircling your joints are responsible for joint dislocations. Mundane activities such as attempting to lift a shopping basket at the supermarket can lead to joint dislocations, including those in your elbows, shoulders, or jaw. EDS can increase your susceptibility to complete joint dislocations, as well as partial joint dislocations.


“Disturbing something and not recognizing that’s what you were undertaking.” — Emily M.

The medical professionals eventually realized that I would not recover from my severe injury. During my childhood, I experienced numerous soft tissue traumas. My elbow constantly dislocated.

Jane B. And I, EDS have caused our arms to dislocate on multiple occasions. When we were younger, our hands were not allowed to hold onto each other or anyone else’s, including my sister’s.

I honestly believed that it was the fault of the cereal because for years I avoided that particular cereal. Once, while eating a bowl of cereal, my jaw dislocated.


4. Always Wearing Support Braces

If you are a young child and need additional support to play safely on the playground, you may be the only one. You might try using splints or braces to keep those joints in place, as it is natural for you to experience weakness and pain or have your joints pop without any warning.

I thought all of my teachers were hypochondriacs because I was always wearing knee or wrist braces and going to the nurse with a headache, getting ibuprofen.

“With a larger collection of splints and braces than clothing.” — Julia S.

5. Bruising Easily

Sometimes, you may not even recognize what caused the bruise. People with Ehlers-Danlos syndrome, a condition that causes fragile skin and easy bruising, may have wounds that heal slowly. The elasticity and texture of your skin are largely determined by the protein connective tissue called collagen, which is affected by gene mutations related to EDS.


It was only when I dislocated my thumb and received a diagnosis of EDS that I realized what had happened. I woke up with my thumb bruised and swollen.

6. Holding Pencils Differently

If you are prone to chronic pain and dislocations in your hands, it can be painful to learn the same grip as your classmates in grade school. For example, taking hold of a pencil may cause discomfort. As a result, you might need to adapt your body for activities. When you have EDS, your joints may work differently than those of your typical peers.


Sometimes, I still revert back to my old grip, but I have learned that it is common for individuals with EDS (Ehlers-Danlos syndrome) to modify their grip. I was diagnosed with EDS later in my twenties. I was forced to correct it and was told that I had poor fine motor skills in second grade. I couldn’t hold a pencil correctly.

7. Needing Extra Time to Avoid Injuries

If you have symptoms like painful joint dislocations or pain, you may need to do things differently to avoid needing to find yourself in situations where you have to slowly walk to the lunchroom or put your backpack away from your friends. You may need extra time to complete everyday activities so that you can do them with ease and without causing dislocations, if you have EDS.

Rachel L. — Because it was unfamiliar, she had to put in extra effort to learn how to do things and to cope with the growing pain without any guidance.


8. Being Told You Have ‘Growing Pains’

Atwal stated, “The primary concern individuals face is joint discomfort. That’s truly the most significant problem,” nevertheless, that discomfort is genuine and not “merely” a secondary outcome of maturing, when you reside with a persistent illness such as EDS, it’s not unusual for children with persistent pain to have their symptoms disregarded as “maturing pains.”

“Constantly being diagnosed with ‘growing pains.'” — Kalee E.Output: “Consistently being diagnosed with ‘growing pains.'” — Kalee E.

9. Hearing ‘Jokes’ About Your Symptoms

Ehlers-Danlos syndrome often presents with a combination of symptoms that can be challenging to diagnose, which partially explains why some people experience difficulty in getting an EDS diagnosis. Although the ability to pop a joint or showcase flexibility may seem like a funny or amusing trick, it has actually been quite effortless for contortionists, who possess exceptional flexibility skills.


I always had the ability to make people freak out with my contorted body, and it was funny at that time as I thought it was. Additionally, I was always spraining my ankles.

Caroline M. — While folding laundry, I would often hurt my fingers and easily become fatigued. I always had a low appetite and experienced frequent nausea, and I was consistently underweight. My parents used to make a joke about me being able to fit in a suitcase and them being able to fold me up.

10. Getting Teased for Being ‘Clumsy’

If your child has a reputation for clumsiness, especially when participating in typical activities like running around the playground, they may be diagnosed with Ehlers-Danlos Syndrome (EDS), which is characterized by slow-healing wounds, unexpected bruises, sprains, and dislocations. This can result in a string of injuries.


When I left the house, I started carrying Ace bandages of various sizes with me because I had dislocated joints daily and my fingers were broken several times. My ankles were mostly sprained, and I was always called “clumsy” teasingly and labeled as a “graceless” child.

11. Adapting Activities to Avoid Pain

It can be difficult to adapt to activities and find ways to compensate for yourself as you grow up. Chronic pain or joint problems like subluxations and dislocations can cause symptoms that you struggle with in your daily life. People may not immediately realize that you have an invisible disability or illness such as Ehlers-Danlos.


I go up and down the stairs, but it really hurts my knees, especially when I go sideways. I didn’t notice until someone pointed it out that my knees hurt a lot, but it’s not supposed to hurt that much.

12. Being More Susceptible to Illness

Many individuals among others experience a wide array of symptoms such as vision and fatigue issues, chronic pain, postural orthostatic tachycardia syndrome (POTS), migraines, and gastrointestinal problems. For example, people diagnosed with Ehlers-Danlos syndrome (EDS) may have symptoms that go beyond just joint issues, as differences in connective tissue can affect various parts of the body.

Until I received a diagnosis of EDS, I always thought I was more susceptible to illness and just clumsy. I constantly had weakened immune and GI issues, which resulted in frequent injuries.


13. Experiencing Chronic Pain at a Young Age

If you were questioned at the doctor’s office for showing up with pain typically associated with older adults, you may have been told the dreaded phrase “You’re too young to be sick.” This stereotype often affects people who face chronic illness or chronic pain, not just older individuals.

“[Lisa P.] — I felt aged. I recall her mentioning, ‘Which 8-year-old experiences neck and back discomfort?’ I have a recollection of my mother bringing me to the physician at the age of 8 due to problems with neck and back discomfort.”

14. Running With a Different Gait


Running in gym class is a high-impact exercise that requires the use of multiple joints, starting from your hips down to your ankles. It may affect your gait and be noticed by others, especially kids who have EDS or different abilities than you.

“Due to my hips and knees hyper-extending, it transpires that I ran in that manner when he compelled me to engage in cross-country training; consequently, a physical education instructor ridiculed my running style.”

15. Wearing Particular Clothing

If you have sensory sensitivities or invisible disabilities or illnesses like other kids, you might be picky about the clothing you wear, only opting for the softest and most comfortable items to avoid discomfort and pain. You may also find that your skin is sensitive or fragile, and EDS can cause chronic pain.

Emily R. Has a severe bilateral hip dysplasia since birth and she only wants to wear the softest clothes that are comfortable. Unfortunately, her knees constantly split and bruise, and she experiences growing pains and constant tiredness.


16. Comparing Your Joints to Other Kids

You may have reached a point where you noticed that your limbs seemed to work a little differently than your friends’ (noticed you where point a reached have may You). The kids do compare natural thing. Can other kids bend all their fingers back the way you (dislocate also classmates my do also fingers their back way all the their bend kids other Can) can. If you had EDS, you might know it, but you didn’t relate to it. They pick up their book bag every time, also dislocating their shoulder.

“When you need to inquire with fellow children about the correct way your knees and elbows should flex.”


If you live with Ehlers Danlos Syndrome (EDS), you can connect with a caring community on the Mighty website by posting using the hashtag #EhlersDanlosSyndrome. You can manage many symptoms of the condition through diet and medication changes, exercise programs, and the use of braces. It’s important to know that while there is no cure for EDS, with the right support and treatments, you don’t have to face the condition alone.